EVALUATION of CLINIC-BASED ORGANIZING · Clinic-Based Organizing is a relatively new concept and it is unclear whether a Campaign like this will address the current challenges patients

EVALUATION OF CLINIC-BASED ORGANIZING

January 2016

Omid Bagheri, Maya Berkowitz, Leecreesha Hicks, Rachel Schaeffer, Amy Tseng, Chloe Winther, Nalani Yoko

Community-Oriented Public Health Practice

University of Washington School of Public Health

In Partnership with

Health Equity Circle, IAF Northwest, and Swedish Cherry Hill Family

Medicine Residency Program

EVALUATION of CLINIC-BASED ORGANIZING

1

TABLE OF CONTE NTS

BACKGROUND 3

Organizing 4

Primary Evaluation Questions 6

Theory of Change 7

Evaluation Plan 8

Phase Zero 9

Listen/Relate 11

Discern/Plan 15

Act/Negotiate 16

Evaluate/Celebrate 17

A Note on IRB 18

Recommendations 19

Limitations 20

Conclusion 21

Glossary 22

Appendices 23

Appendix A Logic Model 23

Appendix B Evaluation Plan 24

Appendix C Patient Recruitment Sheet - Tool 29

Appendix D Post-Event Survey - Tool 31

Appendix E Clinic-Based Organizing General Sign-in Sheet - Tool 33

Appendix F Power Tallying - Tool 34

Appendix G Patient Health Self-Survey - Tool 37

Appendix H Patient Health Self-Survey Tool – Scoring Guide 39

Appendix I Patient Data Collection Tables 42

Appendix J Medical Provider Surveys - Tools 44

References 48


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EX EC U T IV E S U M MA RY

Industrial Areas Foundation Northwest (IAF), in partnership with medical residents at the

Swedish Cherry Hill Family Medicine Residency Program and the Health Equity Circle (HEC), want to

organize patients and medical residents along with medical providers to improve patient engagement

in their healthcare plan and initiate medical provider discussions of social determinants of health in

exam room settings. The Clinic-Based Organizing Campaign will directly organize with patients, which

builds on IAF’s long tradition of community organizing and HEC’s ability to engage healthcare

practitioners around public health issues.

The Campaign will engage patients using IAF’s organizing cycle which begins with listening to

community needs and desires, selecting a unifying issue identified as a problem, and organizing actions

in an effort to positively affect community change and engage individuals. The Clinic-Based Organizing

Campaign specifically starts with engaging patients through relational meetings, followed by events and

activities where community members, including patients and medical residents, come together and

share issues adversely affecting them and their community. Medical residents will be organizing

alongside patients in a “power-with” approach to mitigate structural power dynamic which intrinsically

exists between patients and medical providers.

Clinic-Based Organizing is a relatively new concept and it is unclear whether a Campaign like this

will address the current challenges patients and medical providers face. This evaluation plan includes

formative, process, and outcome evaluations of the Clinic-Based Organizing Campaign, in an attempt to

help track the progress of the Campaign as well as assess the efficacy of using Clinic-Based Organizing

to address patient health and medical provider burnout.

This report outlines a five stage evaluation plan based on the IAF organizing cycle with the

addition of a pre-stage “Phase Zero.” In order, the five stages are Phase Zero, Listen/Relate,

Discern/Plan, Act/Negotiate, and Evaluate/Celebrate. For each stage of the organizing cycle, we

included an evaluation plan and suggested detailed measures for the following: collect baseline and

outcome data for patient satisfaction and self-reported health, assess and track the level of

involvement and satisfaction in organizing of patients, and changes in medical provider burnout and

comfort discussing social determinants of health.

The evaluation plan outlined in this report was developed by graduate students in the

University of Washington’s School of Public Health Community-Oriented Public Health Practice Program

with oversight from department faculty member Ian Painter. This was developed as a guiding tool that

the IAF and HEC can use when they begin implementing a Clinic-Based Organizing Campaign. This

report’s appendices includes a myriad of tools and tables to supplement the evaluation plan as well as

a comprehensive logic model. All bolded terms in this report are explained in the glossary on Page 22.

B A C K G R O U N D

The Swedish Cherry Hill Family Medicine Residency Program at the Swedish Cherry Hill Family

Medicine Clinic serves a diverse and multi-racial population of patients in the heart of Seattle’s Central

District neighborhood. Its mission as a program is to train physicians of diverse backgrounds to provide

evidence-based community-oriented primary care while advocating for social justice to improve health

and well-being of their patients and larger geographic community. At its inception in 1974, the

program accepted four medical residents from around the country. The program has since expanded to

host 36 medical residents at the Cherry Hill Campus and several other local community health centers

such as Sea Mar, Seattle Indian Health Board, and Carolyn Downs Family Health Center. Starting in

2016, the program will expand to the International Community Health Services (ICHS)’s International

District Medical and Dental Clinic.

The Program serves patients throughout the greater Seattle area, however, a significant portion

of patients live in Southeast Seattle, Central District, and Beacon Hill/Georgetown/South Park

neighborhoods where about 20% of Seattle’s 608,781 residents reside.1,2 In these three

neighborhoods, more than 30% of residents fall below 200% of the federal poverty line. Also a greater

percent of children live in these neighborhoods compared to other areas of Seattle (16, 23, 22%). The

Southeast Seattle and Beacon Hill/Georgetown/South Park neighborhoods have the highest

percentage of residents with no high school (19, 23%) or college education (65, 72%) within Seattle. All

three neighborhoods are home to Seattle’s largest proportion of Asian and Black residents. Compared

to other Seattle areas, those living in these three neighborhoods are predominantly people of color

(65, 45, 73%). Notably, the Beacon Hill/Georgetown/South Park neighborhood has the highest percent

of foreign born residents (43%) and the most non-English speaking households (57%). Southeast

Seattle also has a significant number of foreign born (31%) and non-English speaking households

(41%).2

To understand the patient population at Swedish Cherry Hill Family Medicine Residency

Program, it is necessary to examine their health outcomes. In Seattle, residents of the Central District

and Southeast Seattle neighborhoods have the lowest life expectancies at birth (78.6, 78.7 years)

compared to the overall King County life expectancy of 81.6 years. According to the King County Health

Profile, the Central District, Southeast Seattle, and Beacon Hill/Georgetown/South Park neighborhoods

have some of the worst health indicators associated with leading causes of death. The Central District

ranked highest in rates of cancer, diabetes, and influenza/pneumonia while Southeast Seattle ranked

highest in rates of heart disease, Alzheimer’s disease, stroke, and chronic liver disease/cirrhosis.2

These poor health outcomes have not gone unnoticed by the medical providers and medical

residents who see patients from these neighborhoods. These medical providers and medical residents

have realized that these patients are sometimes unable to adhere to medications or treatment plans

due to social factors out of their control such as homelessness, unemployment, lack of insurance

coverage, and more. With the current medical system, medical providers have found themselves

frustrated trying to help patients resolve biomedical issues that are caused or exacerbated by factors

beyond the control of patient or medical provider.1 Medical providers at Swedish Cherry Hill Family

Medicine Residency Program have expressed a desire to better address the social determinants of


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health in the exam room and work collectively to address social determinants of health affecting

patients.

Working in partnership with the Swedish Cherry Hill Family Medicine Residency Program to

support their efforts to address social determinants of health are two organizations, the IAF and HEC.

IAF is a network of eight different Alliances across Washington, Oregon, Canada, and Australia,

including the Spokane Alliance and Sound Alliance in Washington. The organizations within the

Washington state-based Alliances have different missions and work in a variety of sectors including

religion, education, health, labor, community-building and more. Through a collective partnership with

IAF, the Alliances are able to successfully organize together around regional issues, such as immigrant

services, housing, homelessness, education, and other challenges identified by communities.

Since 2009, IAF has been working with University of Washington health sciences students and

other healthcare professionals to apply the IAF organizing methodology to address social determinants

of health. To support this work, the HEC, Sound Alliance, and Spokane Alliance have developed a

course, “Health Equity and Community Organizing,” offered at the University of Washington Seattle

campus and Washington State University Spokane campus. The class provides space for students to

learn and apply organizing skills on various health related issues.

Currently, Health Equity Organizing is IAF’s largest program effort regionally, taking place at

various residency programs and community clinics in the Pacific Northwest. The Swedish Cherry Hill

Family Medicine Clinic medical residents are being trained with the tools and skills needed to organize

with patients to improve health outcomes.3,4 Together with the Swedish Cherry Hill Family Medicine

Residency Program, the IAF and HEC are leading a Clinic-Based Organizing Campaign within Swedish

Cherry Hill Family Medicine Clinic to organize patients and medical residents to improve patient health

outcomes and reduce medical provider burnout.

O R G A N I Z I N G

Industrial Areas Foundation (IAF) Organizing Fundamentals

Following in the footsteps of founder and legendary organizer, Saul Alinsky, the IAF uses

community organizing as an avenue to meeting the needs of low-income populations. The IAF is a

faith-based organization known for their “iron rule” of “never do for people what they can do for

themselves,” and places emphasis on training as many natural leaders to create systemic change on a

larger scale. IAF also follows the “relational organizing” approach, focusing on relationship building

within and between organizations and lifting up the stories and voices of community members. This

requires building strong partnerships and multidisciplinary alliances.5 Relational organizing can be used

to address a variety of social issues including health disparities because it can center the voices and

experiences of minority populations often not recognized or included in the decision-making process.

Especially when fighting against dominant belief systems and decisions, organizing can express and

validate community experiences, beliefs, and knowledge.6


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IAF’s Organizing Cycle

Before explaining IAF’s organizing cycle, it is important to understand the role that power plays

in organizing. In the essay “Two conceptions of power,” Theologian Bernard Loomer explains two types

of power: unilateral power, “power over”, and relational power, “power with”. Unlike unilateral power,

which is presented as a constant battle for a finite amount of power, relational power is shared equally

among community members and its value lies in both the influence an individual gives and absorbs.7 In

every step of its organizing cycle, the IAF is cognizant of the role and influence of power and works to

bring relational power to the practice of organizing. This conception and practice of shared collective

power can be used in all four steps of the IAF Organizing Cycle, which include:

1. Listen & Relate: The first step of the IAF’s Organizing Cycle is to listen to participants and begin

forming strong relationships. This can be done through what is called a listening campaign. The

listening campaign consists of three different events: one-on-one relational meetings, small group

meetings, and larger group meetings. The goal of the listening campaign is to connect members,

identify “problems” participants are experiencing in their communities, and find new energy and talent

within the group. The listening campaign is led by core leaders who received training prior to

organizing and continue to learn throughout the organizing process.

2. Discern/Plan: Once all voices and priorities have been heard, the group will analyze the identified

“problems” from the listening event and find common themes. By taking what were once individual

interests/challenges and turning them into common interests, participants can begin to think

collaboratively about next steps. Once the “problem” has been identified and agreed upon, the group

will work together to develop concrete, specific, and winnable issues by researching the “problem” at

hand and conducting a power analysis. At the same time, core leaders look for participants who are

passionate and invested in the issue and could be cultivated as strong leaders. If interested, these

individuals are offered training or given responsibilities to increase their leadership within the

organizing campaign.

3. Act/Negotiate: Now that the research has been completed and an action plan has been

developed, organizers are able to take action on an issue. Actions can consist of negotiating with

stakeholders, encouraging community members to vote or speak in favor of a bill or initiative, or

reporting to leaders the injustice they are experiencing. In the end, the goal is to seek initiatives where

each party walks away feeling like they won, and the community organizers feel like they were able to

stand for something they believe in.

4. Evaluate & Celebrate: Once a negotiation or agreement has been made, the group can evaluate if

their process was successful, identify the lessons learned, discuss the experience of group collaboration

while also celebrating the work they completed and the relationships built.

In collaboration with the IAF, the Swedish Cherry Hill Family Medicine Clinic’s patients and

medical residents, HEC hopes to explore a new form of organizing, Clinic-Based Organizing, as a

mechanism to improve patient health outcomes as well as medical provider burnout.1


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Clinic-Based Organizing

Clinic-Based Organizing mobilizes patients as healthcare constituents within the clinic to help

determine the scope of the campaign and improve individual health outcomes.8 The HEC has found

anecdotal evidence in community organizing that indicate individuals may be more likely to take action

and overcome challenges in their own lives if they become involved in an organizing campaign. In

addition, through the organizing process, individuals learn leadership skills which can translate into a

sense of agency in various aspects of participants’ lives. For patients in the clinic setting, the HEC

believes the more involved patients are in their health and well-being the greater their levels of

engagement will be in their healthcare. By using an organizing approach, the HEC hopes to “engage

patients as a whole people, exploring all of the factors that influence their long-term health outcomes

and surfacing the areas where they currently have energy to act.”1 To better understand preconditions,

assumptions, needed interventions, and short- and long-term goals for this campaign, we need to

understand the primary goals, evaluation questions, and the theory of change for this Campaign.

P R I M A RY E VA L U AT I O N Q U E S T I O N S

To understand the primary goals of the Clinic-Based Organizing Campaign and its efficacy, it is

important to identify and understand primary evaluation questions. Through the development of a

theory of change and a multi-stage evaluation plan, several primary questions were designed to

specifically look at the different components of the Campaign focusing around the organizing

framework as well as patient and medical provider experiences. Below are the guiding evaluation

questions for each of these categories.

Organizing:

Is Clinic-Based Organizing an effective tool for improving positive patient health

outcomes?

If patients are given the tools to organize, will they want to organize?

Patient:

How can we track patient activities as a result of Clinic-Based Organizing?

In what ways would patients want to engage with organizing activities? What would

motivate patients to get involved?

Medical Providers:

Are trainings preparing medical providers to talk about organizing?

Are trainings preparing medical providers to discuss social determinants of health with

patients?


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T H E O R Y O F C H A N G E

After applying the theory of change model to Clinic-Based Organizing and developing primary

evaluation questions, the following long-term goals were identified:

1. Reduce burnout among medical providers,

2. Increase medical providers’ ability to communicate about the social determinants of health,

3. Increase patient engagement during clinical visits,

4. Build trusting relationships between medical providers and patients, and

5. Participate in community organizing with Swedish Cherry Hill Family Medicine Clinic.

The five steps to create a theory of change are:

I. Identify a long-term goal

II. Conduct "backwards mapping" to identify the preconditions necessary to achieve the long-term

goal

III. Identify the interventions that will be implemented to create these preconditions

IV. Develop indicators for each precondition that will be used to assess the performance of the

interventions

V. Write a narrative that can be used to summarize the various moving parts in your theory

Many priorities were identified as long-term patient goals such as increased health literacy,

improved trust in their medical providers, and engagement in organizing around the social

determinants of health. For example, if a patient’s level of engagement in a Campaign improves their

health and well-being, this may increase their interest in becoming more active in other dimensions of

their health. Factors that may help or hinder a patient’s level of engagement includes whether the

patient has the time, support of family and friends, means of transportation, and motivation to attend

listening campaigns and organizing events.

The three main medical provider priorities in our theory of change are medical providers’

comfort level in talking about the social determinants of health and clinic-based organizing with

patients, level of trust in their patients, and investment in relationships with the patients as well as the

clinic community at large. For example, patient-provider trust is a two-way street. Patients usually

disclose personal information to medical providers they trust, whereas patients with low levels of trust

in their medical providers are less likely to report adhering to their medical providers’ advice. Similarly,

medical providers need to trust a patient to provide truthful information or commit to a treatment

plan.9 Through the power sharing model explained above, relationship building between medical

providers and patients as well as continuity of care can lead to higher levels of trust. Longer term

relationships between medical providers and patients can lead to a greater understanding and

familiarity with mannerisms that create a more comfortable and trusting relationship. Building trust

with patients through a "power with" model will support organizing around shared social determinants

of health solutions.


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Theory of Change

E VA L U AT I O N P L A N

Using the IAF’s organizing cycle, below are a set of recommended steps to take when evaluating

the Clinic-Based Organizing Campaign and outcomes to measure to determine whether the

overarching evaluation question is being answered: Does patient engagement through Clinic-Based

Organizing led by medical residents result in improvements in measures associated with positive

patient health outcomes?

Through this evaluation question, the research question, “What are the effects of a Clinic-Based

Organizing Campaign on patient well-being and patient-provider relationships?” can be answered.

These recommended steps are broken down within each phase of the Campaign and also

separated by organizing, patient, and medical provider outcome groups. This evaluation plan attempts


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to explain how to determine whether or not the Campaign reached its objectives, provide data

collection points throughout the implementation, and ensure the Campaign is delivered as designed.

Although an organizing campaign may not unfold in this exact order, this plan is designed to help

evaluate the process of Clinic-Based Organizing and overall outcomes from the Campaign. Phase Zero

identifies evaluation recommendation prior to the beginning of the Campaign.

Phase Zero

Before beginning an intervention, such as Clinic-Based Organizing, one recommendation is to

collect baseline data. Initial baseline data will demonstrate whether the Campaign is necessary and

provide measures which can be used to compare results as the Campaign progresses and eventually is

complete. Having good baseline data prior to starting an intervention can ensure any changes over time

are captured and reportable, explaining future outcomes.

HEC students will conduct initial relational meetings with patients. It may be valuable to evaluate

students’ readiness to conduct these meetings and patient experiences of these initial interactions

(see Appendix C).

Patients:

To begin assessing patient health, it is recommended that an electronic health record (EHR)

report be built. The report would include data from Swedish Cherry Hill Family Medicine Clinic patients

over the age of 18, living in zip codes 98122, 98118, and 98144. It is important that this report not be

de-identified and include both demographic and preventative health data to provide trackable data on

the patients that do and do not participate in Clinic-Based Organizing. This data will provide the

Campaign with basic, objective measures of patient health that can be assessed at various points

throughout the Campaign if desired. The demographic data will describe the organizing and non-

organizing patient groups, while the health data will track any changes in preventative health and

health behaviors throughout the Campaign. Preventative health and behavior change data are

important sources for the following reasons:

They are not associated with a patient's disease status, which can be more challenging to

measure;

Behavior change often happens before patients see differences in health metrics or outcomes;

and

If patients’ behavior changes due to Clinic-Based Organizing, there is a possibility to increase

the scope of the work based on financial and program capacity.


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Components of this report should include, if available, but are not limited to:

Demographic Data

Age

Race

Primary Language Spoken

Gender

Zip code

Education Level

Income

Health Data

BMI

Frequency of missed

appointments

Preventative screenings completed

Adherence to prescribed treatment

Insurance status

The Swedish Cherry Hill Family Medicine Clinic, in partnership with the IAF, is encouraged to

develop an informed consent form for all patients who participate in Clinic-Based Organizing to sign

during their relational meeting. This ensures that patients understand how their participation and

responses to surveys are used by campaign organizers and institutions associated with this Campaign.

Medical Providers:

Medical Provider Survey: In an effort to streamline the evaluation process, it is suggested that leaders

administer a medical provider survey at regular intervals that cover different aspects of general well-

being with adjustments in the questions over time. The baseline survey will include questions from the

Maslach Burnout Inventory (MBI, described below) in addition to the core survey questions covering

social determinants of health and medical provider trust towards patients (also described below). The

timing of the survey can be contingent to the timeline of the final program, but a different set of

questions administered at different phases is recommended. When a “medical provider survey” is

referred to throughout this report, it is in reference to this survey.

It is recommended that leaders collect baseline data for medical providers and medical

residents burnout, knowledge of discussing social determinants of health with patients, and the

level of trust medical providers developed with patients.10,9

Social Determinants of Health: Talking about the social determinants of health in the exam room is a

key component of the Clinic-Based Organizing Campaign. Assessing medical providers’ comfort level

and confidence in their ability to talk about the social determinants of health is critical to

understanding the possible effects of the interventions. A scale, inspired by a study assessing the

impact of a social determinants of health curriculum on medical residents, was developed for this

purpose.10

This scale is designed to measure the awareness among medical providers of the social

determinants of health as factors in patient well-being, and identify the level of perceived

barriers in talking about the social determinants of health in the exam room.


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Trust: Another goal of the Clinic-Based Organizing Campaign is to increase trust between medical

providers and patients. It is important to assess the development (or lack of development) in medical

provider trust of patients.

For this purpose, a scale developed by Thom et al. to assess medical provider trust in patients

is recommended. Thom et al.’s scale is correlated with physician behaviors indicative of

trusting patients, like opioid prescription measures, and is validated for internal reliability and

construct validity.9

Community Organizing Training: Medical residents at the Swedish Cherry Hill Family Medicine Clinic

are receiving cultural competency training with the intention of trying to shift the dialogue in the exam

room to focus on systemic problems as primary contributors to health outcomes rather than individual

behavioral choices. To assess whether medical residents are receptive to this and learning the

appropriate skills, it is recommended that the HEC create metrics (either grades, papers, or projects) to

ensure a standard level of knowledge gained.

Medical Provider Burnout: The HEC is invested in creative ways to prevent medical provider burnout,

and requested that this evaluation plan include the Maslach Burnout Inventory (MBI) to assess medical

provider burnout at baseline prior to participating in Clinic-Based Organizing.

The MBI is a “gold standard” validated measure of medical provider burnout. These

questions are from an abbreviated version that includes domains like “emotional

exhaustion” and “personal accomplishment”. The original also includes a domain of

“depersonalization”, (sample item: “I don’t really care what happens to some patients”),

which is left out of this evaluation plan because it can be difficult to answer honestly.

Frustration can lead to high levels of burnout and low job satisfaction for medical providers,

which could ultimately lead to providing poor medical care. Clinic-Based Organizing could

prevent medical provider burnout and instill a renewed sense of mission in medical

providers. Therefore, it is important to measure burnout at the beginning and end of this

Campaign.

Listen/Rela te

Organizing:

Relational Meetings: To better gauge patient interest in Clinic-Based Organizing, it is recommended

that HEC students take observational notes during relational meetings as well as provide patients with

the opportunity to give feedback on their experience. There are two relational meeting tools in the

appendix:

The first tool will help HEC students collect both quantitative and qualitative data. It will

track how many patients students approach, how many are interested in participating in a

relational meeting, and how many declined. There will also be a space for students to take

observational notes on patients’ interest in Clinic-Based Organizing (Appendix C).


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The second tool will be given to patients to assess their experience in the relational meeting

and their thoughts about Clinic-Based Organizing. This tool asks questions about whether

patients felt empowered after the meeting and their interest in participating.

This is the patient recruitment phase of the Campaign. If patients do not seem interested or it seems

difficult to “recruit”, consider what may not be working. Consider if this is the most effective way to

engage patients and patients’ interest in Clinic-Based Organizing. Also, consider asking patients for

their recommendations or comments.

Participation: Once the first group meeting is held, it is recommended a sign-in sheet is available at all

meetings to track the number of participants and how they heard about Clinic-Based Organizing. The

tracking sheet may provide a better sense of participant interest including: patients, medical providers,

and medical residents. See Appendix E for an example of a possible sign-in sheet.

The sign-in sheet provides a space for participants to write their name, identify as patient,

medical provider, or medical resident, and explain how they heard about Clinic-Based

Organizing. It will be important to consider the balance between the number of patients

and medical providers who attend each meeting.

Power: To ensure that power is shared equally among patients and medical providers, one

recommendation is to have an individual not actively involved in the Clinic-Based Organizing Campaign

observe each meeting and take quantitative and qualitative notes. See the power tallying tool in

Appendix F.

The tallying tool will track how many individuals have made a comment or asked a

question throughout each meeting, if they are a medical provider or patient, male or

female, and how many times each individual has spoken. If it appears that only one group

is speaking, patient or medical provider, it is important to assess why this may be

happening. As meetings continue, assess if power dynamics have changed and if

imbalances in participation occur.

It may also be important to measure power by receiving input from participants. This could be

accomplished through a survey that asks questions in regard to power dynamics or could be in the

form of a focus group lead by a local leader who is trusted in the community.

Relational Organizing Trainings: During the organizing cycle, if participants receive relational

organizing training, it is recommended that a pre- and post-test related to the specific training material

is given to participants. By distributing an identical pre- and post-test, trainers can evaluate participant

understanding of training materials and the clarity of training. The pre- and post-test could include the

fundamental principles of organizing or any information the HEC and IAF identifies as important. If

scores improve from the pre- to post-test, this may show that the training was effective and

participants understood the fundamental points of the training.


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Patients:

Self-Reported Survey: During this initial phase, self-reported patient health data will be critical to

acquire. It is recommended that Swedish Cherry Hill Family Medicine Clinic begin collecting self-

reported health data from patients living in zip codes 98122, 98118, and 98144 for baseline and

comparative data analysis. To accomplish this, a Patient Health Self Survey (See Appendix G) can be

administered to patients over the age of 18 living in the aforementioned zip codes while they wait to

see their medical provider. It is recommended that the survey be administered at times determined by

the campaign organizers.

This Patient Health Self Survey includes questions about confidence in managing health

conditions, perceptions of individual overall health, mental health, experiences of pain,

quality of sleep, sense of safety, social isolation, as well as health literacy and patient

interest in Clinic-Based Organizing. The purpose of these questions is to assess whether

participation in Clinic-Based Organizing improves a patient’s perceived health and well-

being compared to patients who do not take part in the Campaign.

For data analysis purposes, Appendix H is a Patient Health Self Survey scoring tool that can

be tracked throughout the Campaign.

One recommendation for administering the Patient Health Self Survey is to ask front office staff to

confirm patient zip code and provide patients with the survey. The clinic staff may consider integrating

this survey into the pre-existing patient satisfaction survey currently used in the clinic, if the

distribution methods are aligned.

Patients who choose to participate in Clinic-Based Organizing will be self-selecting, also known as a

convenience sample; see more about this in our limitations section.

If possible, surveys should be labeled with the appropriate identifying patient information,

which will be kept confidential according to HIPAA regulations and attached to their EHR, ensuring that

patient data collected at multiple points in time can be aggregated for analysis at the end of the

Campaign. During the relational meeting, patients will be asked to sign an informed consent form and

complete the Patient Health Self Survey at the point in which they indicate they are interested in

participating in the Campaign. All patients living in the designated zip codes should be offered this

survey when they visit the clinic for an appointment. However, it is optional for all patients who do not

participate in the Clinic-Based Organizing Campaign. One mechanism to ensure patients receive follow-

up surveys is to place an alert in the patient’s chart in EHR.


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In this evaluation plan, it is recommended that data be collected at baseline before the Clinic-Based

Organizing Campaign starts and at the end of the Campaign, at the very least. The frequency in

which patients and medical providers are surveyed can be determined by those developing this

Campaign based on capacity and feasibility.

Patient Satisfaction: The Swedish Cherry Hill Family Medicine Clinic’s patient satisfaction survey data

may be helpful to assess before and after the implementation of the Clinic-Based Organizing Campaign

and during different intervals throughout the Campaign. This survey will help evaluate if building trust

and engaging patients in the exam room and beyond may contribute to satisfaction on the clinic level.

Being able to show positive changes in patient satisfaction may encourage the hospital administration

and medical providers to continue to invest in innovative programming.

Participation: Once Clinic-Based Organizing begins at the Swedish Cherry Hill Family Medicine Clinic, it

is important for the healthcare team to evaluate patient participation in exam room visits. To assess

patient participation, in a designated location in EHR, it is recommended that all medical team

members in contact with a patient identify and record the number of questions a patient asks. This is

one way to track patient engagement. This may require some initial training to ensure medical team

members are appropriately documenting this data, allowing it to be tracked for comparative analysis.

Medical Providers:

Social Determinants of Health Conversations: In continuing to measure medical providers’

conversations about the social determinants of health and their trust of patients, it is recommended

that the questions outlined in Phase Zero continue to be used, with the possibility of amending specific

questions. See Appendix J for full question sets.

Organizing: Medical provider participation in the Clinic-Based Organizing Campaign can further

strengthen their relationship with patients, as well as restore their sense of mission, and improve job

satisfaction. Medical providers who participate in the Campaign have the opportunity to interact with

their patients in a non-clinical setting, build trusting relationships and a deeper understanding of their

patients through discussions of social determinants of health and possible solutions.

As program activities ramp up during this phase, we recommend that the medical provider

survey administered during this phase include questions about program activities,

particularly around accessibility and medical provider satisfaction with these activities. We

have provided some sample questions in the Appendix describing the medical provider

survey, but consider the types of activities you would like to do and what you hope medical

providers will get out of them and develop questions to add to the medical provider survey.

Medical provider involvement in listening campaign activities should also be tracked

through the same sign-in sheets as the other groups participating in the sign-in sheets use.


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Discern/Plan

Organizing:

Participation: In addition to continuing the use of sign-in sheets (See Appendix E), it is recommended

that the number of individuals in leadership roles is tracked. In the appendix described above, there is

a space to identify who is in leadership roles. It is recommended that leaders are tracked by their

patient provider designation and that leadership roles are shared equally among participants. If

leadership roles do not reflect participant representation, it is recommended that power dynamics in

the Campaign be reassessed.

Power and Trust: It is recommended that the tracking of power dynamics continues by assigning an

individual to tally the number of people speaking during meetings. Identify any changes from the

listen/relate phase of the organizing cycle and consider the implications of these possible changes. It is

recommended that participants are given a survey asking questions about empowerment and trust.

Identify if the findings from these surveys are similar or different from what is being reported on the

power tallying tool. These questions are important to ask to ensure that power is shared and

participants feel comfortable in the Campaign space.

Patients:

Patients who participate in initial events and activities affiliated with the Clinic-Based

Organizing Campaign will be asked to complete a short survey after each event/activity to gauge their

experiences. It will help determine if patients are interested in and having a positive experience with

this type of event as well as whether it has been beneficial to their health and wellness. This brief

survey should ask for their name and date of birth so the responses can be tracked with their

correlating EHR health data. See Appendix D for some question recommendations.

Power of Storytelling:

Consider collecting qualitative patient and medical provider data through individual interviews and

focus groups. This could be an opportunity to collect stories about how participating in a Clinic-Based

Organizing Campaign has improved patient adherence to prescribed therapies, decreased patient

feelings of isolation, reinvigorate medical providers, and more. Interviews may also be an

opportunity to gain insight into components of the Campaign that are working well and

opportunities for improvement. Stories collected could be compelling for funders or future

participants.


16

Medical Providers:

Social Determinants of Health Conversations:

Medical providers are encouraged to continue conversations about social determinants of health with

patients in the exam room to improve their ability to communicate effectively about the systemic

issues affecting patients’ health. Medical providers can instigate a cultural shift in the clinical setting,

transitioning from a focus on individual behavior choices to the social determinants of health. Not only

can the medical providers engage patients in conversations about the social determinants of health,

medical providers can also engage their co-workers (medical assistants, front desk staff, social workers,

and other medical providers) in conversations about the social determinants of health to ultimately

make a culture shift.

Medical providers’ trust in patients and knowledge of and ability to communicate about the

social determinants of health will be measured through the medical provider survey. One

recommendation is to continue to assess medical provider trust as well to see if any

changes happen during this phase (See Appendix G).

Act/Negotia te

Organizing:

The Campaign action is not yet determined due to the nature of relational organizing, therefore

the type of evaluation questions ultimately asked are unknown. Some general considerations include

the number of people from the clinic who participated, whether this number increases as the

Campaign progressed, and the number of patients versus medical providers who participated. It is

important to continue to measure power and trust within the group and ensure all individuals feel

heard and are part of a team.

Whether the Campaign activity is to call political leaders, educate a community on the

importance of voting, or lobby at the state capitol, it is important to identify whether the overall

Campaign goal was achieved. This is an opportunity to identify what works and what challenges remain

during individual actions, giving leaders an opportunity to support changes requested by individuals

and the group.

Patients:

A campaign will be selected based on input from patients, medical providers, and other

community members. All patients who choose to participate in the Clinic-Based Organizing Campaign

will be asked to complete a short survey after each action to gauge their experiences. It will help

determine if patients are interested in and having a positive experience with this type of Campaign as

well as whether it has been beneficial to their health and wellness. This brief survey should ask for

their name and date of birth so the responses can be tracked with their correlating EHR health data.

See Appendix D for some question recommendations for patients who participate in the Campaign.


17

Medical Providers:

During this phase, it is important to continue asking questions regarding the social

determinants of health (see Appendix G), and questions focused on Campaign processes, activities, or

events. Medical providers will continue to engage in dialogue on the social determinants of health with

patients in the exam room and co-workers in the clinic setting. In addition, medical providers can use

their position of power at listening campaigns or organizing events to push for issues in the best

interest of their patients. Working collaboratively with patients to advocate for what they want will

move the Campaign forward.

Evaluate/Celebrate

Organizing:

As a Campaign cycle comes to a close, it is important to evaluate whether or not goals were

achieved based on the data collected throughout the Clinic-Based Organizing Campaign process. Using

the logic model, begin to determine if short-term goals were achieved such as if power was shared

during organizing and trust between patients and medical providers improved. As these short and

intermediate goals are answered through the analysis of evaluation data, in time, begin to determine if

long-term goals were also achieved.

Patients:

Self-Reported Survey: Patients who participate in Campaign events and/or were active in the actions

will be asked to retake the Patient Health Self Survey at the end of the Clinic-Based Organizing

Campaign cycle, regardless of whether they are still actively participating. When analyzing the data, it

is important to take into consideration that some of these patients may have recently taken the Patient

Health Self Survey as part of their routine clinic visit depending on how the survey is distributed, the

length of the Campaign cycle, and frequency of patient visits.

Pre-Post Analysis: Concurrently, analysis can begin on the patient EHR and survey data. The purpose of

data analysis is to compare patient health data and self-reported health data from before the start of

the Clinic-Based Organizing Campaign cycle and after the completion of a Campaign cycle between

patients who did and did not participate. Comparing these two groups can help demonstrate

differences, or lack thereof, in health outcomes over time.

Over the course of the Campaign, it may be found that there is a correlation between the level of

participation a patient or medical provider demonstrates during the Campaign and the changes in

their baseline and endline data. It is worth considering how someone's level of participation may

affect their outcomes and experience.


18

Medical Providers:

Medical Provider Burnout: To measure the Clinic-Based Organizing Campaign’s effectiveness in

reducing burnout among medical providers and increasing their ability to communicate about the

social determinants of health, a final survey will be distributed. This survey is similar to the Phase Zero

survey, which includes the MBI questions (measuring burnout) in addition to the other questions

measuring whether medical providers feel stronger ties to patients’ communities, have higher levels of

trust in their patients, and are comfortable discussing the social determinants of health with their

patients. Analyzing initial medical provider data from Phase Zero in comparison to the final survey data

can demonstrate whether the Clinic-Based Organizing Campaign improved medical provider outcomes.

A N O T E O N I R B

To ensure ethical clinical research practices, an Institutional Review Board (IRB) is tasked with

reviewing human subject research plans. The IRB is responsible for assessing the possibility of patient

harm and preventing unsafe and unethical research practices. The National Research Act requires IRB

approval for human subject research under federal law and provides an ethical framework for how to

conduct appropriate clinical research and evaluation.11 An IRB provides structure for protecting human

subject’s privacy using practices such as informed consent, controlled data collection and storage,

confidentiality, and regulations to publication. Most research institutions have an IRB committee that

is responsible for reviewing and approving research proposals.12,13

First, a need for IRB approval must be determined. An IRB is necessary if research meets the

Federal Policy for the protection of Human Subjects definition of human subject research, which

includes “a systematic investigation, including research development, testing and evaluation, designed

to develop or contribute to generalizable knowledge...”14 If the research falls within this definition, IRB

approval is required before research can begin. A research proposal to an IRB committee will need to

demonstrate how human subjects privacy and confidentiality will be protected and how risks of patient

harm and coercion will be reduced.13

Reasons to seek IRB approval for an evaluation include: protecting patients from inappropriate

or prying questions, ensuring a structure for informed consent, and guaranteeing patients understand

both the risks and benefits of participating. An IRB is especially important if research will (1) be

published in an academic journal, (2) work with vulnerable populations who need extra care or

considerations before research begins, or (3) meet funding or stakeholder requirements for research.12

You can find more information about federal regulations and the IRB process at:

http://www.hhs.gov/ohrp/archive/irb/irb_guidebook.htm




19

R E C O M M E N D AT I O N S

Based on the evaluation plan outlined in this report as well as IAF and HEC’s commitment to

community based organizing, recommendations to consider as the Clinic-Based Organizing Campaign

moves forward include:

1. Host Brown Bag Seminars for clinic staff, inviting community leaders to speak on social issues

affecting patients. These seminars can increase clinic staffs’ awareness of their patient

population. The number of attendees (medical residents, clinical staff, and other medical

providers) can be recorded and questions be incorporated into the medical provider survey.

2. Offer incentives for patients to participate in all events and activities throughout the Campaign.

Without certain incentives, like child care, some patients may not be able to attend Campaign

events. Other patient incentives to consider include, but are not limited to, providing

transportation, food, gift cards, or other financial benefits.

3. Conduct an Initial EHR Assessment to determine whether current systems provide data

components to record social determinants of health. If certain data components exist, provide

training for medical staff on how to record social determinants of health from patients in the

EHR system. This Initial EHR Assessment will help staff more accurately track patient health and

changes of social determinants of health over time in conjunction with each other.

4. Identify "Champions" amongst the clinic staff and medical residents to lead organizing efforts

on-site to help keep patients and fellow staff engaged in the work. Due to the high level of

coordination needed for a listening campaign to be widely promoted and attended amongst the

medical provider and clinic community, two “champions” are needed to manage dates, venue,

and attendance rate. It is recommended that a clinic staff champion and medical resident

champion collaborate to plan and publicize listening campaign logistics. Continue using sign-in

sheets to track attendance at listening campaigns and organizing events.

5. Build team-based care models that arrange medical providers in a racially diverse healthcare

team. Additionally, the ratio of physicians to medical assistants and nurses should be taken into

consideration due to power imbalances intrinsic in the structure of the healthcare system.

6. Develop a database that auto-fills all survey data based on tables and figures similar to what is

provided in this report. This database, similar to a formulated spreadsheet, could bring all

organizing, medical provider, and patient measures into one location with auto-filling data

fields.

7. Develop an alternate survey tool similar to the Maslach Burnout Inventory (MBI) survey which

can be used specifically for medical residents as they may not experience burnout similar to

medical providers.


20

L I M I T A T I O N S

While building the evaluation plan, several limitations were identified that may need further

consideration:

Initial Needs Assessment

Intrinsic to the evaluation plan outlined in this project is the assumption that patients will choose to

engage in a Clinic-Based Organizing Campaign. The HEC’s relational meetings are necessary to assess

patient interest. Additionally, patients and community response to relational meetings and other

Campaign events and activities will dictate how this or any other evaluation plan gets implemented.

Ultimately, the data collection process may change based on the needs communicated through

community engagement.

Convenience Sampling and Self-Selection Bias:

The advantages of convenience sampling are relatively low costs and data is easier and quicker to

gather compared to other sampling methods. The limitations of this type of sampling, however, can

lead to low generalizability of data results across the population. Since patients involved in the

evaluation plan and the Clinic-Based Organizing Campaign are self-selected, convenience sampling

does not allow for results representative of the entire patient population the Swedish Cherry Hill

Family Medicine Clinic serves. Considerations around ensuring the participating patient population is

demographically diverse and representative of the community could be beneficial and also support the

success of a Campaign.

Measuring for Student Involvement

The inclusion of student outcomes and engagement were not specifically addressed within this

evaluation plan. Due to the variable student participation opportunities through HEC, considerations

regarding student measures can be implemented if desired. Student measures can potentially be

modeled after the medical provider measures included in this report.

Racial Power Imbalance

Although the racial demographics of Swedish Cherry Hill Family Medicine Residency Program and other

clinic staff were not available for the creation of this report, it may be beneficial to acknowledge the

intrinsic power imbalance between the primary geographic neighborhoods served by the clinic, which

are predominantly people of color, and the medical providers who treat them. This is especially

important for operating within the “power-with” organizing principles laid out by IAF. Various

dynamics between patients and medical providers or HEC students should be acknowledged. This is

particularly important given the healthcare system’s hierarchical structure, which may lead to patient

and medical provider relationships lacking trust and mutual respect.


21

Language Barriers

To address the high proportion of non-English speaking residents living in the Central District,

Southeast Seattle, and Beacon Hill/Georgetown/South Park neighborhoods, interpretation services or

other resources should be provided for patients to authentically participate in this Clinic-Based

Organizing Campaign. If language barriers are not considered, it will prevent non-English speaking

patients from being able to participate, may increase feelings and experiences of marginalization, and

exacerbate the very health outcomes the Campaign aims to address. Non-English speaking students

may need to be recruited for relational meetings to engage all patients interested in the Campaign and

interpreters may need to be hired to attend events, meetings, and actions.

C O N C L U S I O N

Based on the above evaluation plan, this Campaign will be successful when patient health

outcomes are improved in the Central District, Southeast Seattle, and Beacon Hill/Georgetown/South

Park neighborhoods, and medical providers, feeling more job satisfaction through organizing,

experience less burnout. For patients, the EHR data and Patient Health Self Surveys comparing health

behavior, self-reported health status, and engagement measures between organizing and non-

organizing patients in the Campaign will identify whether any changes in these indicators are due to

the Clinic-Based Organizing Campaign. Furthermore, collecting data on the frequency of meeting

attendance, the number of leadership roles accepted, and other measures of patient participation will

speak to the level of excitement and engagement in the Campaign. Through these measures, it can be

determined if patients who participate in this Campaign reported greater improvements in their self-

reported health and an increased sense of capacity to make changes that matter within their

communities compared to those who did not participate.

For medical providers, at the end of the Campaign, any changes in the medical provider survey

results of those who participated in the Clinic-Based Organizing Campaign will demonstrate the effects

of participating in the Campaign on medical providers and medical residents. If the Campaign is

successful at engaging medical providers in Campaign activities, there may be increases in job

satisfaction and reports of less burnout among participating medical providers. This report

hypothesizes that over the course of the Campaign, survey results will show that medical providers

develop higher levels of trust in patients, a greater comfort and facility with communicating about the

social determinants of health, familiarity with resources in the communities outside the clinic, and

decreased burnout due to job dissatisfaction.

Although the quantitative results of the created tools for this evaluation plan may provide a

significant amount of data indicating whether these groups experience positive changes as a result of

the Campaign, the qualitative responses and individual stories will be more indicative as to whether

the Campaign was a success or not.


22

G L O S S A RY

Community Organizing: Defined by Saul Alinski as the “values-based process by which people – most often low-

and moderate- income people previously absent from decision-making tables – are brought together in

organizations to jointly act in the interest of their ‘communities’ and the common good.” Through community

collaboration, the hope is that participants learn how to hold responsibility for the future of their community,

build relationships while also growing individually.

Core Leaders: In each step of organizing, there are leaders who take on roles in research action, recruitment, or

in various meetings. This is the core of people who move the campaign forward. They receive training prior to

and throughout the campaign.

Electronic Health Record (EHR): An electronic based system for recording and storing patient medical history

data collected overtime by clinic medical staff. (CMS, 2012)

Informed Consent: The process in which a medical provider discloses the possible benefits and risks to a patient,

and knowing those possibilities, a patient makes a decision for themselves. (OHRP, 2013)

Health Literacy: The ability to obtain, process, and understand health information to make health decisions and

access services.

Relational Meeting: One-on-one thirty-minute interaction between organizing leaders and potential organizers.

The goal of relational meetings are to find interests between organizing leaders and potential organizers. This

might give a potential organizer more stake for joining an organizing cause.

Social Determinants of Health: Conditions in the environments in which people live, learn, work, and play that

affect a wide range of health, functioning, and quality-of-life outcomes and risks.15

Self-Selection Bias: A type of non-probability sampling that leads to study participants not representative of the

target population. Two common types of self-selection bias include grouping by interest of individuals and

impartial resource selection. Self-selection bias grouped by interest runs the risk of only choosing individuals

who are interested and excluding those without interest, misrepresenting the target population. The second is a

resource selection bias where researchers find materials which fit their hypothesis.

Theory of Change: This model outlines all the steps and obstacles that may occur when reaching a long-term

goal. It is essential to use in program planning and evaluation as it explains the underlying theory and reasoning

of how and why an initiative works, including indicators that measure the completion of early and intermediate

steps needed to reach the long-term goal. A theory of change is an iterative modification throughout

stakeholder engagement, program design, implementation, and evaluation. Pre-conditions and assumptions

must be identified for progressive steps to successfully occur. A theory of change can also help avoid harmful

biases that may perpetuate health disparities rather than improve them.16

A P P E N D I C E S Appendix A Logic Model Problem Statement: Patients receiving care at Swedish Cherry Hill clinic who live in our target neighborhoods are disproportionately affected by the social determinants of health, leading to high rates of chronic

illness and disease. Similarly, healthcare providers and medical residents are frustrated and restricted to resolving biomedical issues within the clinic, rather than addressing the social determinants of health.

Frustration can lead to high levels of burnout and low job satisfaction for family care providers. Building trust with patients through a "power with" model can lead to organizing around shared social

determinants of health solutions. Clinic-based organizing will be used as a strategy to improve patient health outcomes through engagement with their providers and ot her community members.

Goals: Reduce burnout among healthcare providers and increase ability to communicate about social determinants of health. Increase patient engagement during clinical visits, build trusting relationships with

providers, and participate in community organizing with Swedish Cherry Hill clinic.

RATIONALES INPUTS OUTCOMES - IMPACT

Resources Activities Short-Term Intermediate-Term Long-Term SDOH contribute to health

disparities more than individual health behaviors, but clinic settings are currently unable to address them.

The act of organizing with your community around issues affecting your health will galvanize individuals to invest in their own health and wellbeing.

Educating providers and organizing patients gives them the opportunity to find common ground and improves the provider-patient trust in exam room settings.

Healthcare providers, with training, can shift exam room dialogue to focus on how systemic problems are the main contributors to health outcomes rather than individual behavioral choices.

Through a power-sharing model, relationship building between providers and patients can lead to higher levels of trust within the clinic and throughout patient communities.

Trainer for medical residents

Staff champion who can publicize meeting and training information to medical residents/ patients

Medical resident champions to spread the word around and handle logistics

Space for meetings and trainings

$8,000 Nimble grant

Web-based survey tools

HEC/ IAF support

Electronic medical records for maintaining patient information

Leaders from patient geographic community willing to organize

Patient incentives for participation

Patient consent

Train medical residents on cultural competency and relational organizing to better meet the needs of their patients

Hold Cultural Competency Trainings (led by HEC)

Conduct relational meetings between HEC students and patients using the IAF model

Conduct patient-centered activities, such as educational opportunities, engagement with existing community resources, and group visits

Conduct Listening Campaign meetings

Gather pre- and post- program patient health data through the clinic's electronic medical records system.

Gauge patient interest and experience in relational organizing (pre- and post-meetings)

Gather patient demographic information for research purposes and to monitor power dynamics between patients and providers.

Providers are trained in cultural competency and relational organizing

Providers participate on issues spurred by patient organizing

Providers develop new language in the exam room to speak to patients about the social determinants of health

Patients feel empowered to take control of their own health in the exam room and beyond

Patients identify as more health literate

Patients receive culturally competent care

Patients feel better understood and feel comfortable sharing all of their health care challenges with their provider.

Provider burnout prevention/resiliency

Providers have a renewed sense of mission

Providers can provide culturally appropriate care

Providers have stronger workplace relationships that can facilitate relational organizing

Empowers providers to participate in social change beyond the exam room

Patients experience improvements in health measures (i.e. adherence to medical therapy)

Patients identify as feeling less socially isolated (more involved in community)

Patients identify clinic as their health care home

Patients are participating in community-based organizing with residents, HEC and IAF organizers.

Reduce burnout among healthcare providers

Increase ability of providers to communicate about social determinants of health.

Cultural shift in the clinical setting towards addressing social determinants of health

Improved patient health and well-being through clinic-based community organizing and increased patient engagement in their healthcare goals at the Swedish Cherry Hill clinic leads to higher life expectancy and self-reported health among patients in the Central District, Southeast Seattle, and Beacon Hill/Georgetown/South Park neighborhoods.

ASSUMPTIONS ● Patients want to participate in this relational organizing model ● Relational organizing will work in a clinic setting because it has worked in other similar settings

● Patients have the capacity to engage in organizing in this manner ● Patients agree with the concept that the social determinants of health contribute to their health issues


24

Appendix B Evaluation Plan

Outcome

Group Potential Questions Data Collection Methods/Tools

Data Collection

Frequency Outputs

Development Phase (No patient engagement)

Patient

What are the patient’s

health outcomes?

How do patient health

outcomes throughout

program

implementation?

How do patients view

their interactions in

the exam room?

Collect a EHR and demographic

report including (report should not

be de-identified to assist in tracking

individual patient involvement):

Age, race, gender

BMI

A1C

Blood Pressure

Smoking Habits

Cholesterol

Alcohol consumption

Physical activity

Asthma

Insurance status

Preventative screening completed

Frequency of missed appointments

- EHR data

Provider

Does training in Social

Determinants change

provider’s dialogue in

the exam room,

focusing on how

systematic problems

are the main

contributors to health

outcomes rather than

individual behavior

choices?

Provider survey questions about knowledge of social determinants of health and comfort in talking to patients about it. Social history section in EHR that asks questions about the social determinants of health, if applicable.

How much burnout do

providers/residents

feel?

Alternate survey tool similar to the Maslach Burnout Inventory (MBI) survey


25

Providers

Are providers able to

build strong

relationships and trust

with patients?

Provider trust in patients:

Questions can be found here:

http://www.annfammed.org/conte

nt/9/2/148.full

Listen/Relate (Relational Meetings with Patient)

Organizing

How many relational-

meetings?

How many patients

did providers

interview?

Power tallying tool

Power Qualitative questions

Once during the

meeting

Once after the

relational meeting

is complete

Patient

What is the

demographic

information of

patients and what zip

code do they live in?

How trustful were

they of their provider?

What was their level

of interest in

organizing?

Patient Health Self-Survey given to

patients (living in zip codes 98122,

98118 and 98144) while they wait

to see provider;

- General health - Mental health (anxiety

depression, isolation) - General physical comfort

(presence of pain) - Sleep - Health literacy - Interests and capacity for

change/organizing - Sense of community - Feelings of safety

Match self-reported survey results

with health data from EHR (from

the previous phase). All patients

that participate in clinic-based

organizing who have not previously

taken the survey will be asked to fill

out a survey when participation

begins

Patients should

receive this survey

every 6 months or

every time they

come for an

appointment,

whichever is longer

http://www.annfammed.org/content/9/2/148.full

http://www.annfammed.org/content/9/2/148.full


26

Patient

What was the level of

patient interest in the

relational meeting

Observation tool Sign-in Sheets Patient survey to gauge interest in participating, trust in provider, and empowerment Patient Listen/Relate Recruitment Tool

At the presence of

any events. Patient

Relational meeting

surveys should be

taken after each

relational meeting.

Discern/Plan

Patient

Is this type of

organizing meaningful

to patients?

Do they feel it is

beneficial for their

health?

Questionnaire using a Likert scale:

-Was this event/activity a good use

of your time?

-Did you feel heard?

-Did you understand the purpose

and goals of the event/activity

-How likely are you to attend

another clinic-based organizing

event/activity

-Please share any comments of

concerns

Every meeting

Provider

What was the level of

provider interest in

listening campaigns?

Sign-in log sheet for providers

Organizing

How many patients

and residents showed

up to the listening

campaign (out of

those who took part in

relational meetings)?

What other ways did

patients and residents

hear about the

listening campaign?

Sign-in sheet which identified who

was a patient and provider and

asked how they heard about the

listening campaign

Listening campaign sign-in tool; Ask

how patient heard of the

campaign.

Every meeting


27

Organizing

How many patients

and providers

spoke/asked

questions during the

meeting?

How many times? And

was the proportion to

those who did not

speak?

Power Tallying Tool Every meeting

How many patients

had increased

knowledge and

understanding of

relation organizing

after the workshop?

Pre and Post surveys of

understanding about relational

organizing (to crafted based off of

curriculum used to implement

training)

Pre and post survey

on relational

organizing

workshop which

would be given

prior to training

and after the

training

-How many patients

and providers feel

empowered?

-What are the levels

of trust patients have

in providers?

Patient survey to determine empowerment and trust

Focus group check-ins with patients and providers (separately) to gauge power dynamics and trust

Act/Negotiate

Patient

Is this type of

organizing meaningful

to patients?

Do they feel it is

beneficial for their

health?

Patient Survey to determine

empowerment and trust

Relational Meeting qualitative

questions

Organizing

How many patients

and providers are in

leadership roles? Is it

proportionate to the

number of individuals

in each group who are

involved?

Power tallying tool

Power qualitative questions

Every meeting


28

Organizing

How many patients

and providers and

involved in this phase?

Sign-in sheet which identified who

was a patient and provider Every meeting

How empowered do

patients and providers

feel?

Patient trust survey Every meeting

How trustful are

patients of their

providers?

Surveys using a Likert scale to

determine empowerment and trust Every meeting

Evaluate/Celebrate

Providers

Does clinic-based

organizing reduce

provider burnout?

An alternate survey tool similar to

the Maslach Burnout Inventory

(MBI) survey.

Track turnover rate/retention of

providers using clinic data/exit

interviews

At the end of

organizing cycle

Are providers able to

build strong

relationships and trust

with patients?

Provider trust in patient survey.

Patient What are the patient’s

health outcomes?

Collect an EHR and demographic

report including (report should not

be de-identified to assist in tracking

individual patient involvement):

Age, race, gender

BMI

A1C

Blood Pressure

Smoking Habits

Cholesterol

Alcohol consumption

Physical activity

Asthma

Insurance status

Preventative screening completed

Frequency of missed appointments

- EHR data


29

Appendix C

Patient Recruitment Sheet - Tool

Name/Patient ID Date Interest in a Relational Meeting?

Yes No

Patient Listen/Relate Recruitment - Data Collection

Interested in a Relational Meeting? N = %

Yes

No


30

Post-Relational Meeting Questionnaire

Did you feel empowered after the meeting?

Did you think a clinic-based approach is an appropriate way to address health disparities in your community?

Are you interested in participating in future clinic-based organizing events? Why or why not?

Appendix D

Qualitative Questions:

Describe a few things that you liked about this process and a few things you would change next time

Post-Event Survey - Tool

Instruction:

Please indicate how much you agree or disagree with the following statements by circling your answer

The issue discussed was relevant to my family and me Strongly Agree Agree Neither agree

nor disagree Disagree

Strongly

Disagree

I felt heard Strongly Agree Agree Neither agree


Strongly

Disagree

I feel healthier since I began participating Strongly Agree Agree Neither agree


Strongly

Disagree

I felt comfortable taking on a leadership role Strongly Agree Agree Neither agree


Strongly

Disagree

How likely are you to attend another clinic-based organizing event/activity? Very Likely Likely Neither likely

nor unlikely Not likely Not very likely


32

Patient Listen/Relate Recruitment Survey - Data Collection

Question Strongly

Agree Agree

Neither agree


Strongly

Disagree

N % N % N % N % N %

The issue discussed was relevant to my family and me

I felt heard

I feel healthier since I began participating

I felt comfortable taking on a leadership role

Very Likely Likely

Neither Likely nor

Unlikely

Not

Likely

Not very

likely

N % N % N % N % N %

How likely are you to attend another clinic-based

organizing event/activity?

Appendix E

Clinic-Based Organizing General Sign-in Sheet - Tool

Name Age Zip Code Are you patient or

healthcare provider?

How did you hear

about this event?

Clinic-Based Organizing General Sign-in Sheet - Data Collection

Demographic Characteristics N %

Age 1 - 35 years

35+ years

Zip Code

98122

98118

98144

How did they

hear of the event?

Provider

Friend

Other

Appendix F

Power Tallying - Tool

Patients Providers Notes

(Please take note if there are any individuals

who are speaking more than others, from both

patient and provider prospective. Also take

notes on overall representation at meetings

and/or events)

Men Women Men Women

(Observable Decision Making)

General Representation:

who is speaking for whom and what are class, race,

gender, and other differences?

Instructions: Tally the number of times patients and

providers speak up in a group conversation

Coalition Dynamics:

How are decisions made and how is conflict managed?

Instructions: Tally the # of individuals who influence

group decisions or raise conflict

Hidden Power

(Setting the Political Agenda)

Public Representation:

What does representation look like in formal political

spaces?

Instructions: Tally the # of patients and providers attend

more formal, macro-level meetings


35

Qualitative Questions for Patients:

What part of this meeting/activity made you feel safe to share your thoughts?

What part of this meeting/activity made you feel unsafe to share your thoughts?

How has this activity empowered you?

Invisible Bias (shaping meaning)

Internalized Social (race/gender/ethnicity/class/etc.):

What roles and stereotypes are played out in family,

work and community?

Instructions: Tally the number of patients or providers

that who make assumptions about the particular

community they wish to serve. (i.e. Do people think they

are too "stupid" to understand the problems that affect

them? # of people who think the community has no role

and no right in changing their situation and that they're

to blame for being poor?)

Leadership Roles

Instructions: Tally the number of leadership positions

held.

Qualitative Questions for Providers/Students:

What ways did you exercise “power with” strategies to facilitating this meeting/activity?

How were power dynamics balanced during the meeting?

Identify methods to empower patients for the next meeting/activity.

Elements of this data collection tool were inspired by the following source:

https://www.justassociates.org/sites/justassociates.org/files/toolsforanalyzingpower.pdf

https://www.justassociates.org/sites/justassociates.org/files/toolsforanalyzingpower.pdf


37

Appendix G

Patient Health Self-Survey - Tool

Instruction:

Please indicate how much you agree or disagree with the following statements by circling your answer

I am confident I can help prevent or reduce problems

associated with my health Strongly

Agree Agree

Neither agree


Strongly

Disagree

I know what each of my prescribed medications do. Strongly

Agree Agree

Neither agree


Strongly

Disagree

I am confident that I can tell whether I need to go to the

doctor or whether I can take care of a health problem

myself

Strongly

Agree Agree

Neither agree


Strongly

Disagree

I am confident that I can tell a doctor concerns I have

even when he or she does not ask Strongly

Agree Agree

Neither agree


Strongly

Disagree

I am confident that I can follow through on medical

treatments I may need to do at home Strongly

Agree Agree

Neither agree


Strongly

Disagree

I understand my health problems and what causes

them

Strongly

Agree Agree

Neither agree


Strongly

Disagree

General Health

In general, how would you rate your own health? Excellent Very Good Good Fair Poor

Compared to a year ago, how would you rate your health in general today?

Much

Better

Somewhat

Better

About the

Same

Somewha

t Worse

Much

Worse

How difficult is it for you to perform the following activities?

Vigorous activity such as running, lifting heavy objects, playing sports

Not at all Slightly Moderately Severely Very

Severely

Moderate activity such as moving a table, bowling, walking several blocks, carrying groceries


Severely

Light activity such as walking a block, bending, kneeling, and bathing


Severely

Emotional Health

Instructions: During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities

as a result of any emotional problems (such as feeling depressed or anxious)?

Accomplished less than you would like: Yes No

Didn’t do work or other activities as carefully as usual: Yes No


38

Have emotional problems interfered with your normal social activities with family, friends, neighbors, etc.?


Severely

Do you feel like you have someone you can talk to? Yes No

Do you generally feel happy? All of the

Time

Much of

the Time

Some of the

Time

Barely

Ever Never

Pain

During the last 4 weeks, how would you rate your bodily pain, if any?

None Mild Moderate Quite a bit Extremely

During the last 4 weeks, how much did pain interfere with your normal work and daily activities?

Not at all Somewhat Moderate Quite a bit Extremely

Sleep

How often do you feel tired or worn out? Never Rarely Some of the

time

Most of

the time

All of the

time

How often do you feel well rested when you wake up?

Never Rarely Some of the

time

Most of

the time

All of the

time

Organizing

Do you see any of the following issues as problems in your community? (Check all that apply) [HEC/IAF organizer or clinic staff member: provide example of issues here based on local knowledge]

Would you be interested in participating in events with your community to address any of these issues? (Check all that apply)

[HEC/IAF organizer or clinic staff member: use same issues from previous question]

How often do you feel you have free time each week I have no

free time

Yes, I have

a little (1-3

hrs/week)

Yes, I have

some (4-6

hrs/week)

Yes, I have

a lot (7+

hrs/week)

Safety

Do you feel safe in your community? I have no

free time

Yes, I have a

little (1-3

hrs/week)

Yes, I have

some (4-6

hrs/week)

Yes, I have

a lot (7+

hrs/week)

Appendix H

Patient Health Self-Survey Tool – Scoring Guide

Source Question Answers Score Notes

PAM

* Each answer in this

survey corresponds

to the point score

indicated in the Score

column.

* The higher the total

score, the better a

patient rates their

self-reported health

I am confident I can help prevent or reduce problems associated with

my health.

Disagree Strongly, Disagree,

Agree, Agree Strongly, N/A

1-4 (worst to best)

0 for Neither

I know what each of my prescribed

medications do.



1-4 (worst to best)

0 for Neither

I am confident that I can tell

whether I need to go to the doctor

or whether I can take care of a

health problem myself.



1-4 (worst to best)

0 for Neither

I am confident that I can tell a

doctor concerns I have even when

he or she does not ask.



1-4 (worst to best)

0 for Neither

I am confident that I can follow

through on medical treatments I

may need to do at home.



1-4 (worst to best)

0 for Neither

I understand my health problems

and what causes them.



1-4 (worst to best)

0 for Neither

SR-36

In general, how would you rate your own health

Excellent, Very good, Good, Fair,

Poor 5-1 (best to worst)

Compared to a year ago, how

would you rate your health in

general today?

Much better, Somewhat better,

About the same, Somewhat

worse, Much worse

5-1 (best to worst)

How difficult is it for you to

perform the following activities? -


40

SR-36

Vigorous activity such as running,

lifting heavy objects, playing sports Not at all, Slightly, Moderately,

Severely, Very severely 5-1 (best to worst)

Moderate activity such as moving a

table, bowling, walking several

blocks, carrying groceries

Not at all, Slightly, Moderately,


Light activity such as walking a

block, bending, kneeling, and

bathing



During the past 4 weeks, have you

had any of the following problems

with your work or other regular

daily activities as a result of any

emotional problems (such as

feeling depressed or anxious)?

-

Accomplished less than you would

like: Yes, No Yes = 1, No = 2

Didn’t do work or other activities

as carefully as usual: Yes, No

Yes = 1, No = 2

(Yes, bad; No,

good)

Have emotional problems

interfered with your normal social

activities with family, friends,

neighbors, etc.?



Do you feel like you have someone

you can talk to? Yes, No

Yes = 1, No = 2

(Yes, bad; No,

good)


41

SR-36

Do you generally feel happy?

All of the time, Much of the time,

Some of the time, Barely ever,

Never

5-1 (best to worst)

During the last 4 weeks, how would

you rate your bodily pain, if any? None, Mild, Moderate, Severe,

Very severe 5-1 (best to worst)

During the last 4 weeks, how much

did pain interfere with your normal

work and daily activities?

Not at all, Somewhat, Moderate,

Quite a bit, Extremely 5-1 (best to worst)

How often do you feel tired or

worn out? Never, Rarely, Some of the time,

Most of the time, All of the time 5-1 (best to worst)

How often do you feel well rested

when you wake up? Never, Rarely, Some of the time,

Most of the time, All of the time 5-1 (best to worst)

Do you see any of the following

issues as problems in your

community? (Check all that apply)

[HEC/IAF organizer or clinic staff

member: provide example of issues

here based on local knowledge] no score

Would you be interested in

participating in events with your

community to address any of these

issues? (Check all that apply)

[HEC/IAF organizer or clinic staff

member: provide example of issues

here based on local knowledge] no score

How often do you feel you have

free time each week?

I have no free time, Yes, I have a

little (1-3 hrs/week), Yes, I have

some (4-6 hrs/week), Yes, I have a

lot (7+ hrs/week)

no score

Do you feel safe in your

community? Yes, always, Yes, often, Yes, some,

No, not often, No, not at all 5-1 (best to worst)

TOTAL SCORE

Appendix I Patient Data Collection Tables

Table 1. Patient Demographics by Organizing Participation Status – Data Collection

Mean (SD) or %

Demographic Measure

Organizing

Participants

(N = )

Non-Organizing

Participants

(N = )

Age

Income

Race *insert options based on existing

categories in record taking*

Zip Code

98122

98118

98144

Education level

8th grade or less

High school graduate or GED

Some college

Associate or Bachelor's degree

Master's or PhD

Sex

Primary language spoken English

Non-English

Table 2. Average Percent Change from Baseline to Endline of Patient EHR indicators, by

Organizing Participation Status – Data Collection

EHR Indicator

Mean % Change in Behaviors

from Baseline to Endline

Organizing

Participants (n = )

Non- Organizing

Participants (n = )

BMI (n = )

Adherence to Prescribed Treatment (n = )

Insurance Status (n = )

Preventative Screenings (n = )

Frequency of Missed Appointments (n = )

Table 3. Individual Patient Health Data Tracking by EHR Indicator – Data Collection

Organizing participant?

(Yes/No) EHR indicator Baseline Midpoint Endline

% Change from Baseline to

Endline P

BMI

Insurance Status

Preventative Screenings

Frequency of Missed

Appointments

Adherence to Prescribed

Treatment

Table 4. Total Patient Health Data Mean Scores Across All Measurement

Points by Organizing Participation Status – Data Collection

Organizing

Status

Patient Health Survey Scores Mean (SD)

Baseline Score Endline Score % Change from

Baseline to Endline CI

Participant

(N= )

Non-

Participant

(N = )

Appendix J Medical Provider Surveys - Tools

I. Physician Trust of Patients: The following survey questions were developed by Thom et al in

an effort to create a measurement tool for mutuality of trust between physicians and

patients.9 The survey was validated for internal reliability and construct validity and can be

used to assess the effect of trust on other aspects of the clinical interaction. These questions

can all be scored across to generate one ‘trust score’, higher scores indicating higher trust

levels. Our recommendation is to survey these questions at every phase of the program.

In general, how confident are you that your patients:

Not at all

confident

Somewhat

confident

Confident

enough

Very

confident

Completely

confident

Provide all the medical

information you need? 1 2 3 4 5

Let you know when there has

been a major change in their

condition?

Tell you about all medications

and treatments they are using?

Understand what you tell them?

Follow recommended treatment

plans?

Be actively involved in managing

their conditions?

Tell you if they are not following

the treatment plans?

Respect your time?

Respect your personal

boundaries?

Not make unreasonable

demands?

Not manipulate the office visit

for secondary gain (e.g. for

inappropriate disability

certification or prescription of

controlled substances?

Keep their appointments?


45

II. Social Determinants of Health: The following questions, about social determinants of

health, were modeled after a study by Klein et al. Medical residents received trainings in

social determinants of health and were tracked over their internship. Participating residents

were surveyed at the beginning and end of their internship and were compared with non-

participating interns from the previous year cohort at the endpoint. For our purposes, these

questions are meant to assess provider’s comfort and familiarity with communicating the

social determinants of health to patients. The scaled questions can be scored in the same

way as the above questions, where a higher score indicates greater comfort and fewer

barriers to addressing social determinants of health. Our recommendation is to ask these

questions at every phase of the program.

How important to do you think social determinants of health are to patient well-being?

1. Not at all important 2. Somewhat important 3. Very important How confident are you in asking your patients about the following social issues?

Not at all

confident

Somewhat

confident

Confident

enough

Very

confident

Completely

confident

Housing

problems 1 2 3 4 5

Difficulty

obtaining

benefits

Food

security

Personal

Safety


46

How much do you agree with the following statements?

Strongly

agree

Somewhat

agree Agree

Somewhat

disagree

Strongly

disagree

There's not enough time in the visit to ask

patients about the social determinants of health

1 2 3 4 5

I don't know enough about the social

determinants of health to ask questions

I'm uncomfortable asking

my patients questions

about social

determinants of health

It's not my job to ask

patients about social

determinants of health

III. Community engagement: The following questions are modeled after Berry et al and are

designed to assess provider awareness of and respect for resources located within patient

communities external to the clinic in which they practice.17 These questions are not meant

to be scored, but if you choose to include our recommendation of a weekly seminar series

to access the community these questions could be used to explore the effects of those

seminars. We recommend these questions be included in surveys during the phases when

seminars or other events designed to connect providers with patient communities are held.

Beyond this clinic, are you aware of other resources for patients within their community?

(e.g., support groups, counseling, or education programs

1. No 2. Yes

Do you routinely refer patients to resources within their community (e.g., support groups,

counseling or education programs?)

1. Never 2. Some of the time 3. Most of the time

IV. Burnout: Lorelei Walker steered us to the Maslach Burnout Inventory (MBI), a validated

‘gold standard’ tool for measuring burnout among physicians.18 These questions are from an

abbreviated version that also includes a few questions in the domain of ‘Satisfaction with


47

medicine’ (in black text).19 The other domains from the original MBI include “Emotional

exhaustion” (in red text) and “Personal Accomplishment” (in green text). The original also

includes a domain of “depersonalization”, (sample item: “I don’t really care what happens to

some patients”), which we chose to leave out since it can be difficult to answer honestly.

These questions are designed to be scored across each domain individually, coming up with a score for

each domain, as well as across the tool. The last two questions reflect positive experiences, so the

scales are flipped.

Every day

A few times a week

Once a week

A few times a month

Once a month or

less

A few times a

year Never

I deal very effectively with the problems of my

patients 6 5 4 3 2 1 0

I feel emotionally drained from my work

I feel fatigued when I get up in the morning and

have to face another day on the job

I feel I'm positively influencing other

people's lives through my work

Working with people all day is really a strain for

me

I feel exhilarated after working closely with my

patients

I reflect on the satisfaction I get from

being a doctor

I think of giving up medicine for another

career 0 1 2 3 4 5 6

I regret my decision to have become a doctor


48

V. Process questions: The following questions are suggestions for how to survey about

program activities. They are not meant to be scored and can be modified for whatever

program activities end up happening. Other survey data or EHR data can be stratified by

responses to these questions.

1. Have you participated in any listening campaign events at the clinic? a. Yes b. No

2. Have you attended the recommended trainings in social determinants of health?

a. Yes b. No

R E F E R E N C E S

1. Pacifc Hospital Preservation Development Authority. 2016 Nimble Fund Grant Cycle 1 Grant Narrative.; 2016.

2. Public Health Seattle King County. King County City Health Profile: Seattle. 2012.

3. IAF Northwest. http://iafnw.org/. Accessed January 23, 2016.

4. Health Equity Circle. http://www.healthequitycircle.org/. Accessed January 23, 2016.

5. Dobson C. IAF Organizing. Ind Areas Found. 2002.

6. Bonilla CM. Racial Counternarratives and Latina Epistemologies in Relational Organizing. Anthropol Educ Q. 2014;45(4):391-408. doi:10.1111/aeq.12077.

7. McCalister, Sara, Catone K. Real Parent Power: Relational Organizing for Sustainable School Reform. Natl Civ Leag. 2013;10(1002):26-32. doi:10.1002/ncr.

8. Farrell-Sheffer A, Manchanda R, Mangia J KN. Can Clinics utilize Community Organizing to

Improve Health Outcomes? 139st APHA Annu Meet Expo 2011. 2011. https://www.researchgate.net/publication/266904900_Can_Clinics_utilize_Community_Organizing_to_Improve_Health_Outcomes.

9. Thom DH, Wong ST, Guzman D, et al. Physician trust in the patient: development and validation of

a new measure. Ann Fam Med. 9(2):148-154. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3056863&tool=pmcentrez&rendertype=abstract. Accessed December 18, 2015.

10. Klein MD, Kahn RS, Baker RC, Fink EE, Parrish DS, White DC. Training in social determinants of health in primary care: does it change resident behavior? Acad Pediatr. 11(5):387-393. http://www.ncbi.nlm.nih.gov/pubmed/21640683. Accessed January 28, 2016.

11. ASH. Code of Federal Regulations. http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html. Accessed January 23, 2016.

12. Levin Penslar R. IRB Guidebook.; 1993. http://www.hhs.gov/ohrp/archive/irb/irb_guidebook.htm. Accessed January 23, 2016.


49

13. Enfield KB, Truwit JD. The purpose, composition, and function of an institutional review board: balancing priorities. Respir Care. 2008;53(10):1330-1336. http://www.ncbi.nlm.nih.gov/pubmed/18811996. Accessed January 23, 2016.

14. (OHRP) O for HRP. Federal Policy for the Protection of Human Subjects (’Common Rule'). http://www.hhs.gov/ohrp/humansubjects/commonrule/. Accessed January 23, 2016.

15. Healthy People 2020. Social Determinants of Health.

http://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-of-health. Accessed January 28, 2016.

16. Lawerence K, Anderson AA, Susi G, Sutton S, Kubisch AC, Codrington R. Contstructing a Racial Equity Theory of Change: A Practical Guide for Designing Strategies to Close Chronic Racial Outcome Gaps. New York; 2009.

17. Berry CA, Mijanovich T, Albert S, et al. Patient-centered medical home among small urban practices serving low-income and disadvantaged patients. Ann Fam Med. 2013;11 Suppl

1(Suppl_1):S82-S89. http://www.annfammed.org/content/11/Suppl_1/S82. Accessed January 28, 2016.

18. Maslach C, Schaufeli WB, Leiter MP. Job burnout. Annu Rev Psychol. 2001;52:397-422.

http://www.annualreviews.org/doi/abs/10.1146/annurev.psych.52.1.397. Accessed January 15, 2015.

19. McManus IC, Smithers E, Partridge P, Keeling A, Fleming PR. A levels and intelligence as predictors of medical careers in UK doctors: 20 year prospective study. BMJ. 2003;327(7407):139-142. http://www.bmj.com/content/327/7407/139. Accessed January 28, 2016.

Documents

EVALUATION of CLINIC-BASED ORGANIZING · Clinic-Based Organizing is a relatively new concept and it is unclear whether a Campaign like this will address the current challenges patients