Two Communities Research and policy worlds culturally distinct Distinct language, timing, thought processes and values

Two Communities

Research and policy worlds culturally distinct

Distinct language, timing, thought processes and values

Researchers tend to see decision making as an event-they deliver their edicts to the impenetrable cardinals’ retreat and await the puff of smoke that signals decision while grumbling about irrationality within the conclave

Decision makers tend to see research as a product they can purchase from the local knowledge store, but too often it is the wrong size needs some assembly, is on back order, and comes from last year’s fashion line

Media Can Cross the Divide

Can raise attention but it may not reach intended target and is rarely able to deliver specific solutions

More like a broad spectrum antibiotic that can sometimes work but also has a higher risk of untoward effects

Stakeholders Can Help to Deliver a Targeted Message

Working with Stakeholders[To Promote Your Messages to Policy Makers]

Rebecca Smith-Bindman, MDProfessor , Radiology and Biomedical ImagingEpidemiology and BiostatisticsObstetrics, Gynecology and Reproductive SciencesUniversity of California, San Francisco

Director, Radiology Outcomes Research Laboratory

An Accidental Health Policy Maker

My research had focused on outcomes research and HSR

Our publication on the radiation of CT coincided with CT overdoses at Cedars Sinai, and intense public interest

2009-2010 visiting research scientist, NCI, provided proximity to decision makers

Experience helped me see large number of ways to impact health care quality that were entirely new to be

I was invited to share my experience of using research to influence policy

Outline of What I Will Emphasize

Need to create a fertile environment for influence

Need to identify playmakers

Need to communicate effectively: good story

Content of ResearchSafety of Medical Imaging with CT

Most medical imaging tests use ionizing radiation

Exposure to ionizing radiation increases risk of cancer

CT uses doses 100-500xs higher than conventional x-rays

Thus the risks of CT are much higher than x-rays

The use of CT is rising rapidly, thus increasing population’s exposure to radiation and cancer risks

Assessment of the Doses Used in Routine CT

We conducted a study to assess the doses used for the most common CT examination types across 4 SF Bay Area institutions

The examinations were grouped by the reasons that patients were sent for CT

We found dramatic variation in doses within and between facilities, and doses that were much higher than widely known

Smith-Bindman, Arch Intern Med 2009

Mean Effective Radiation Dose for Common Study Types: Variation within Anatomic AreaSmith-Bindman, Arch Intern Med 2009

Risk of getting cancer as high as 1/100 from 1 test

Why Are Doses So High and Variable

Few data on practice

No dose targets set for CT

No quality standards

No professional or governmental group responsible for collecting or reporting dose

The US contrasts with other countries

Fixing Radiation Safety in the USThe Case for this being a Health Policy Issue

Imaging is big business and industry has not been willing to take on this issue – it’s a practice of medicine issue

Clinical practice groups have conflicting goals and incentives, and have not wanted to bring attention to this issue

This seems to be a problem where industry and professional societies won’t (or haven’t) fixed itself

There is a model of government oversight in other countries

There is a precedent of government oversight of radiation in mammography

Publication

Our paper was featured prominently in Archives, received widespread media attention

I and the media saw synergy with theme of radiation safety already in the news focused on over doses

I was able to use this to help education the public about broader systems based issues around CT safety

Timing of our Research Provided Opening to Communicate with Policy Makers

Creating a Fertile Environment for InfluenceMedia

The media were interested in learning more about the issues

Media has profound role in educating public and policy makers

Their interest was broad – and they wanted to understand the underlying issues (which are complex)

The more people aware of this issues, the greater possibility of having interested partners engaged to help create policy

I committed a lot of time educating media not just to get coverage for me and UC, but to broaden depth of interest

Purpose of Communicating with Media

Reports tend to be smart, good at conveying message

You need to help them by having clear, concise messages

Be responsive to different perspectives, and tailor your explanations to their interest: $, safety, turf, quality

Discretely help press know who to speak to, put them in touch with the playmakers –conversations will continue without you

Having media interest improves the medium of conversation among all relevant parties: Help Create a Fertile Environment

What Comes Next: Identifying Playmakers

Many different types of organizations have a role in shaping and influencing policy

They very much depend and rely on each other

Congress is particularly interested (?only interested) if the topic is important to their constituents, professional groups, consumer groups, the public

Avenues for Influencing Health Care Quality and Policy

LegislationNational &

State

FDA Regulation

and Oversight

Payers CMS

Quality Organizations

National Quality Forum

Professional & Academic

Societies ACR,

RSNA, ABMS

Research Direct Scientific

Influence

Commissioned Research

IOM, National Academies, US

Preventive Task Force

Industry

Integrated Health Care

Plans

Avenues for Improving Health Care Quality


State

FDA Regulation

and Oversight

Payers CMS


NQF, Joint Commission


Societies ACR,

RSNA, ABMS

Research broad range of

forums




Industry


Plans

Media Provides an Ideal Medium Across All Possible Groups for Influencing Care Quality and Policy


State

FDA Regulation

and Oversight

Payers



Societies

Research


Industry


Plans

Possible Playmakers In Radiation Safety

The more groups you speak to (and influence), the greater the cross talk –influence magnified

The more groups you speak to, the greater your legitimacy

The stakeholders that were relevant to my areaUS Congress: Staff and Legislators; California Congress

Executive Branch: FDA

Quality Organizations: NQF, Joint Commission

Payers: CMS

IOM

Professional Societies, NIH

Industry

Playmakers: Influencing Legislators

Staff are open to hearing from researchers

You are 1 voice among many – need to speak up to be heard

You need to communicate effectively: tell a good story

Communicating with Legislators and Staff

Message straight forward

Why should they care about your view

- alliances allegiances useful

- a single researcher’s view less effective

Becoming a reliable source of information as a knowledge broker is a win-win : You become someone to trust

Speaking as an Expert: Testifying at Congress

During discussions with staff, they asked about whether I thought it made sense to have a hearing

With no experience I said it could be extremely useful and agreed to participate

The hearing was going to be broad – all of radiation

Message was simple

What is the problem: Why is this a health policy question

Recommendations about what needs to be done

FDA: Current Regulatory Environment

FDA in charge of radiation safety

Responsible for approving machines , but no legislative mandate focused on assessing use in clinical practice

I found out where decisions are made, and contacted FDA

I felt they needed to expand their oversight- and I tried to get involved in brokering changes (FDA, Congress, societies)

I spoke several times –first on my initiative, and then on theirs

I emphasized the need for standards, and several recommendations – such as need for standards- were adopted into their subsequent White paper on Radiation Safety

Influencing Playmakers: Quality Organizations

Organizations at Cross Roads of Practice and Policy

I mentioned to Congress need for standards / public reporting

The FDA suggested “reporting” but not who should do this What should be reported and by whom?

I thought it should be FDA, but have not been successful

On a practical level there is a need for someone to write standards that can be used.

There are numerous organizations focused on setting, adhering to standards in medicine

The National Quality Forum (NQF)

NQF non-profit organization focused on improving the quality of health care

They set standards based on implementation of guidelines based on evidenced-base practice

Consensus organization (stakeholders, set priorities)

Endorse national standards for measuring and publicly reporting performances

Promotes reaching goals through education and outreach

Seizing Opportunities

I had never heard of the National Quality Forum

They approached me to be on anexpert review panel relating to a quality metric on mammography

I agreed to serve with intent of learning about their process with goal of submitting a metric on Radiation Safety

FDA decided public reporting would be good, did not have a way to do this, and using this parallel opportunity, I became knowledge broker

NQF Standards

When they adopt standards the impact may be large

The standard development process is grueling

The review process is also grueling: most “standards” rejected

Requirements: broadly applicable, easy applied, validated to be associated with quality and publically reportable

For my metric, I tried to engage support from ACR professional group

HPS scientific group

FDA executive branch

CMS

Several initiatives at CMS focus on quality, with consideration of measures that will improve quality and lower cost

As part of MIPPA (Medicare Improvements for Patients and Providers Act) CMS requires facilities in non-hospital settings to become accredited 1/2012 –

I am working with them adopt a measure that will cover dose and other aspects of radiation quality

Adding radiation safety to meaningful use would be a way to rapidly expand quality efforts

Creating Targeted Research Collaborations

In order to gain a larger voice, I have begun to partner with other groups

I submitted a small pilot grant across the five UC Campuses entitled UC DOSE

The project is focused on radiation safety and the partners are mostly physicists across the UC campuses

They have far more reach than I do in terms of influencing policy makers

The project is very much underfunded, and the bang we are getting for this collaboration in terms of influence (and actual work on standardizing doses) is immense

Other Opportunities

Each opportunity comes with the capacity to increase reach

The Institute of Medicine was commissioned to write a paper on environmental causes of breast cancer (Komen Foundation)

The feedback I received from congress was that to create laws, they needed to see interest from consumer advocates and larger stakeholders

When approached to write the back ground paper on radiation, I seized the opportunity

The IOM used report to conclude radiation most important environmental cause of breast cancer

Ongoing Challenges

The messages of my research / advocacy has not fully overlapped with all professional radiology groups

NQF experience disheartening

I continue to provided evidence from ongoing studies to support my (independent) views

I have also reached out the scientific community - related societies -to further shore up the science

UC DOSE grant – organized research project across the UC medical Centers that has organized physicists, and the UC weight, behind the safety agenda

Avenues for Improving Health Care Quality


State

FDA Regulation

and Oversight

Payers CMS


NQF, Joint Commission


Societies

Research broad range of

forums




Industry


Plans

Planning for Translation

It’s never too early to plan for how you will use your research to influence policy

Ideal to think about from the time you write grant

You don’t know the results of your research but you know topic –hopefully better than anyone else- as well as the stakeholders you need to engage

Engage these stakeholders at the point of applying for funding

How Does A Busy Researcher Have Time

I was on sabbatical - unique opportunity

These activities take a time –as important as science

If you want research to have impact, this needs to be an integral and valued part of time

Funders are now explicitly requiring a plan

Resources to support these activities – investigator and staff time, need to be built into research proposals

This needs to be an integral part of research and thoughtful consideration of what entails, protected time.

Planning for Translation: Think about Stakeholders

Practice Organizations

Professional Societies


Policy Organizations

Media, Public Relations, Patient Representatives

You may need to think creatively

ARISE Program Project Grant

This grant focuses on many aspects of imaging: Appropriate Radiology Imaging for Safety and Effectiveness

Project 1 – Cost / Utilization

Project 2 – Effectiveness

Project 3 – Dose/Safety

Project 4 – Cancer Risk

The stakeholders for different projects are different

A dissemination and implementation plan is a significant and portion of project: several investigators involved

ARISE Program Project Dissemination Plan

Project 1 – Cost / Utilization

Payers, Health Plans, CMS

Project 2 – Effectiveness

Health Plans, Professional Groups, Quality Organizations

Project 3 – Dose/Safety

Health Policy Organizations, Professional Groups, Quality Organizations, Legislators, INDUSTRY COLLABORATORS

Project 4 – Cancer Risk

Scientific and Lay Audience

Multidisciplinary Stakeholder Council

Our Stakeholder Council Involved 25 collaborators who have all agreed to attend our annual meeting and conference calls

Practice based groups

Professional Societies


Policy Organizations:NCRP, FDA

Other: Patient Groups, Media

Translating Research Into Policy

The process of how to use research to connect parties and communicate results is separate from content

Need to work on research and impacting policy/practice in parallel

Need to have a message that’s relevant to policy decision makers , but if you do, this part of the research is the part that will lead to change in quality and practice

Translating Research Into Policy

Starts with clear communication

For me, previous research had focused on nuance, my research was presented in an easily understood fashion which helped

Luck / timing is necessary, but not sufficient

Need to take advantage of opportunities

Need to identify stakeholder and forge collaborations so that you can create a critical mass of interest in topic

Need to identify appropriate policy makers and figure out how to educate and influence their decisions

Documents

Two Communities Research and policy worlds culturally distinct Distinct language, timing, thought processes and values