Patient Outreach Guide

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Patient Outreach Guidefor Hemophilia andOther Bleeding Disorders

Joya Donnelly


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Published by the World Federation o Hemophilia (WFH)

World Federation o Hemophilia, 2008

The WFH encourages redistribution o its publications or educational purposes by not- or-profthemophilia organizations. To obtain permission to reprint, redistribute, or translate this publication,please contact the Communications Department at the address below.

This publication is accessible rom the WFH website at www.w h.org. Additional print copies can beordered rom:

World Federation o Hemophilia1425 Ren Lvesque Boulevard West, Suite 1010Montral, Qubec H3G 1T7CANADATel.: (514) 875-7944Fax: (514) 875-8916E-mail: w h@w h.org

DedicationTo the memory o Line Robillard, who opened the door or me to the world o hemophilia.

AcknowledgementsMany people have participated in the preparation o this guide. Thanks to Cesar Garrido or his help

and advice in writing this guide; to the Venezuelan Association or Hemophilia, the HemophiliaFederation o the Mexican Republic, the Georgian Association o Hemophilia and Donorship,Hemophilia Foundation o Minnesota/Dakotas, Hemophilia Association o New Jersey, and theLebanese Hemophilia Association or contributing case studies; and to Clare Cecchini, Ann-MarieNazarro, and David Page or reviewing it.


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Table o Contents

Introduction 1

Section 1: About patient outreach 3What is patient outreach? 3The benefts o patient outreach 4

Section 2: Organizing a patient outreach campaign 5Step 1: Establish your goal 5Step 2: Defne your target population 6Step 3: Form a project team 8Step 4: Gain support rom the bleeding disorders community 8

Step 5: Build alliances 9Step 6: Determine your strategy 11Step 7: Develop an action plan 13Step 8: Implement the plan 16Step 9: Follow up 18Step 10: Evaluate the outcome 18

Section 3: Cases studies on patient outreach 21

Conclusion 33

Resources 35

Patient Outreach Guide for Hemophilia and Other Bleeding Disorders


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Patient Outreach Guide for Hemophilia and Other Bleeding Disorders 1

IntroductionHemophilia a ects about 400,000 people worldwide and the prevalence o otherbleeding disorders ranges rom about 1 in 1,000 to 1 in 1 million. With treatmentand proper care, people with bleeding disorders can live healthy and productivelives. Without treatment, bleeding disorders, particularly hemophilia, can cause

crippling pain, severe joint damage, and li e-threatening internal bleeding. Sadly,only about 30% o people with hemophilia have been identi ed worldwide, andthe percentage is ar lower or other bleeding disorders. Even ewer still receiveadequate care.

Identi ying people with bleeding disorders through outreach is the rst step intreatment and is essential or improving care. Without diagnosis, people cannotreceive the treatment they need, and without an accurate number o the peoplea ected, governments are much less likely to provide unding or treatment andresearch to nd better treatments or a cure.

Since 1998, the World Federation o Hemophilia (WFH) has collected data on theglobal hemophilia population annually. In recent years, the WFH survey has also

gathered global data on people living von Willebrand disease, other rare actorde ciencies, and inherited platelet disorders. The 2006 survey identi ed 208,006people with bleeding disorders globally, but this is only a raction o the actualnumber. For example, there were 48,276 people with von Willebrand diseaseidenti ed in the 2006 survey, but it is estimated that the disorder a ects about 1 in1,000 people.

Outreach is vital to gain accurate demographic knowledge about bleeding disorderswithin a population. However, national hemophilia organizations, physicians,and health authorities o ten lack the necessary in ormation and/or resources ore ective patient outreach. Having a plan and breaking the process down intosmaller steps makes an outreach campaign more manageable.

This guide is a practical tool to help national hemophilia organizations plan andcarry out an outreach campaign to nd new patients with hemophilia or otherinherited bleeding disorders who have not been diagnosed or are underserved by healthcare services. The guide explains what patient outreach is, describes key steps as well as common challenges to patient outreach, and outlines strategiesor e ective campaigns. Case studies rom di erent countries illustrate variousapproaches, the successes and shortcomings o these initiatives, and lessons learned.The approaches in this guide can be adapted to national and/or cultural contextsor to suit particular objectives.

In order to allow or the proper planning and development o health services, theestablishment o a national registry o people with hemophilia is essential.

It is there ore a recommendation that priority be given to identi cation anddiagnosis o a ected people and their amilies and to the central registration o

individuals with hemophilia and related disorders.

Report o a Joint WHO/WFH Meeting on the Control o Haemophilia:Haemophilia Care in Developing Countries. Geneva, 16-17 June 1997.

WHO: Geneva, Switzerland. 1998.


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Section 1

About patient outreach

What is patient outreach?Patient outreach involves identi ying individuals with hemophilia or other bleedingdisorders who have not yet been diagnosed or whose health needs are not being metby healthcare services. Patients can be identi ed through awareness-raising andeducation activities or by actively seeking out patients or diagnosis.

Patient outreach ocuses on a targeted population, in this case people withhemophilia, von Willebrand disease or other hereditary bleeding disorder, with theaim o identi ying them and providing them with proper treatment and healthcareservices. Finding potential patients and arranging or diagnosis is usually done by organizing a patient outreach campaign within a speci c community, country, or

region. An outreach campaign may include:

Contacting known patients to nd out i they may have relatives with a bleeding disorder who have not been diagnosed and re erring them to a treatment centre or testing;

Organizing a testing day in one or several cities or regions where peoplesuspected o having a bleeding disorder can come or diagnosis;

Conducting a workshop to educate speci c physician groups (suchas general practitioners, emergency room doctors, obstetrician/gynecologists) about the symptoms o hemophilia, von Willebranddisease, or other bleeding disorders and to encourage them to re er patients

suspected o a bleeding disorder to a hemophilia treatment centre. Organizing an education or in ormation session or women and men inthe general population to raise awareness about bleeding disorders andtheir signs and symptoms.

Once patients have been ound, it is important that the relevant in ormation abouteach o them be recorded and maintained in a centralized database or registry. Aregistry is a key tool or tracking the number and diagnosis o people with bleedingdisorders and monitoring their health, or long-term planning or hemophilia organizations, and or priority setting or health care. Having a national patientregistry allows organizations to answer undamental questions about the patientpopulation and advocate or improved care. Without an accurate number o thepeople a ected, governments are much less likely to provide unding or treatment

and research. For more in ormation on registries, see the WFHs Guide to Developing a National Patient Registry.


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The benefts o patient outreach

Identifes underserved or undiagnosed patientsIdenti cation is the rst step in treatment. The greatest bene t o patient outreachis identi ying patients whose needs have not been met.

Provides an accurate number o how many people are a ectedPatient outreach, ollowed by documentation o their medical condition andtreatment in a patient registry, provides precise data on the number o peoplewithin a population who are living with bleeding disorders.

Supports advocacy or treatment and services Accurate in ormation on how many people are a ected in a given region is importantor persuading governments and health authorities in that area to provide undingand services or their diagnosis, treatment, and organization o care.

Provides an opportunity to educate newly identifed patientsOutreach is a key opportunity to help newly diagnosed patients learn more about

their bleeding disorder, its inheritance, treatment and care, and resources andstrategies or maintaining good health.

Builds patient community support and advocacy networksPatient outreach promotes awareness o a national hemophilia organization andgives the patient association an important role in the community. By providingoutreach and support to people living with bleeding disorders, the association llsa need and creates a sense o community.

Builds collaborative relationships with the medical communityWorking with the medical community to identi y and diagnose patients cancreate a strong relationship between the patient association and treaters. Strong

collaboration between the two groups is a key element or improving care.

Raises awareness o bleeding disorders and the patient organizationPatient outreach campaigns can raise the pro le o bleeding disorders and thepatient organization in the general population.


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Section 2

Organizing a patientoutreach campaign

Organizing an e ective patient outreach campaign can be broken down into10 steps:

1. Establish your goal2. De ne your target population3. Form a project team4. Gain the support o the bleeding disorders community 5. Build alliances6. Determine your strategy 7. Develop an action plan8. Implement the plan9. Follow up10. Evaluate the outcome

These steps were developed rom a review o publications on public health andpatient outreach strategies, case studies rom a number o countries with di erentlevels o care or people with bleeding disorders, and interviews with leaders o national hemophilia organizations and World Federation o Hemophilia regionalprograms sta .

These steps provide the basic ramework or organizing a campaign, but thecampaign itsel the goal, the target population, the strategy, and the activitieswill depend on the unique situation o the country or region involved. Di erentresources and di erent healthcare and cultural contexts must be considered. It isthere ore important to adapt the campaign to the reality o the community whereit will be carried out.

Step 1: Establish your goal

It is important to clearly de ne the goal, or desired result, o the campaign. Whentackling a large project, it is easy to lose sight o the goal and try to solve all theproblems aced by a countrys hemophilia population at once. Your goal may ocus on:

diagnosing new patients; building a national registry; nding an underserved population; raising awareness among general practitioners.


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Your goal should be speci c and measurable. It is also important to have a clear,realistic vision o what is achievable.

You may also have secondary objectives that will come about because o thecampaign. These could be, or example, increasing collaboration with physicians,educating patients, or motivating individuals to become involved in theorganizations work. The success o an outreach campaign is not demonstrated solely by the number o new patients identi ed, but by the growth o the organization.

Example: The Venezuelan Association or Hemophilia began its outreach project with the goal o gathering basic patient in ormation and developing a national patient registry or hemophilia. The secondary goal o the campaign was to consolidate the countrys hemophiliacommunity.

Step 2: Defne your target population

Determine not only how many people but also who you are trying to reach. It may be people with hemophilia, von Willebrand disease, other rare actor de ciencies,platelet disorders, carriers, and/or women with bleeding disorders. Also, be speci cabout the geographic area you want the campaign to ocus on.

How many new patients can you expect to identi y?I you are planning a campaign to test and diagnose patients, you need to determinehow many new patients you can identi y. This will depend on a number o actors:the expected number o people living with the disorder (called prevalence), thelevel o care in the country, the size o the country, and the distribution o thepopulation.

Calculating prevalence of hemophilia

Without a registry, it is very di cult to know the exact number o people withhemophilia in the country. Although the proportion o people born withhemophilia (incidence) is usually the same globally, the proportion o peopleliving with the disease (prevalence) varies rom country to country dependingon the level o care available. This is because without proper care, many peoplewith hemophilia die young.

The WFH uses the ollowing ormula to calculatethe estimated number o potential patients:

Prevalence = (population2,000,000 ) x 133For example, in a country with 30 million residents, the estimated numbero people with hemophilia would be about 1,995 individuals.

Based on the estimated prevalence in your country, set an attainable and realistictarget number. It is unrealistic to think that all patients will be ound. Keep in mindthat the more di cult the living situation and inadequate the treatment, the lowerthe li e expectancy o patients. Also, it is very di cult to nd mild cases, becausethese patients rarely or never have bleeding problems. There ore, the target numbershould not be too ambitious.


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Example: When the Hemophilia Association o New Jersey (HANJ) started its registry project to identi y women with bleeding disorders, there were 4 million women in New Jersey. The prevalence o bleeding disorders among women was estimated to be approximately 2%, or at least 40,000 women. I 10% o these women had a severe bleeding disorder, there would be anestimated 4,000 women with serious bleeding problems who remained undiagnosed. HANJ set its target population at 4,000 women with bleeding disorders.

Reaching underserved populationsIn some countries, the majority o people with hemophilia or other hereditary bleeding disorders have already been diagnosed, but there are still somecommunities or populations that are underdiagnosed or undertreated.This could be the case in areas that are ar rom large cities, where access tocomprehensive hemophilia care is more di cult, or or members o a particularreligious community or ethnic group that is rather isolated and is known to haveundiagnosed or underserviced individuals. Usually hemophilia treatment centrescan help in identi ying underserved communities or areas that should be targetedin the patient outreach campaign. This requires comparing the estimated numbero people with hemophilia in the general population and the estimated number o patients in a particular area or who are o a particular ethnicity.

Example: While the U.S. is building a more comprehensive national patient registry andhas a high level o care, a 1998 study by the U.S. Centers or Disease Control and Prevention(CDC) ound that certain ethnic and cultural groups were not as well served as others. The National Hemophilia Foundation launched a Multicultural Task Force to help identi y andreach these underserved populations. This led to an outreach campaign in Native Americancommunities.

Determining the geographic area A countrywide outreach campaign encompassing the whole population andterritory covered by national healthcare services is the best approach to get anaccurate description o the number o people with hemophilia, von Willebranddisease, or other bleeding disorder. However, it is di cult to conduct a patientoutreach campaign throughout an entire country at once, especially in a largecountry. There ore, it is practical to divide the country into several regions andtackle them one by one. A national goal should be established, but the campaigncan then be subdivided by region, province, state, or city.

There is a greater chance o success in areas with larger populations, because themore people you reach, the more people with bleeding disorders you will identi y.Starting an outreach project in an urban area will bring better results.

A map is a very valuable tool or determining the regions in which to concentrateoutreach e orts and or an overall understanding o the situation in a given country.The estimated and known number o patients in each region can be written on themap. This helps gauge how many patients remain to be ound and determine the

areas where the needs and the chance or success are the greatest. Example: In Mexico, the Hemophilia Federation o the Mexican Republic (FHRM) began itsoutreach project in one region, Jalisco, because it had a well-structured patient association anda large urban population. A ter the success o this project, the FHRM is now doing a secondoutreach project in the national capital region, which has a high population density and the fvelargest national medical centres in the country or the treatment o hemophilia.


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Step 3: Form a project team

A patient outreach campaign is a major project that requires a great deal o time ande ort. To lead the campaign, youll need a strong project coordinator and a teamthat is dynamic, available, and ready to work. This team will be the core o the project.The strengths o each member must be utilized and tasks assigned according toeach members interests and skills, be it coordination, communications, education,

medical knowledge, administration, logistics, etc. The project team should includemembers o the national patient organization and quali ed health care providers.

All project team members should have basic knowledge o hemophilia and othertarget bleeding disorders, as well as political, cultural, or socio-economic awarenesso the target population. Speci c knowledge and expertise on medical issues, publichealth, advocacy, community outreach, communications, and administration arealso needed. I the team members do not have all the knowledge or skills requiredor the work, you may want to organize workshops or in ormation sessions and/or distribute relevant educational materials on the bleeding disorder(s), the stateo care in the target community compared to elsewhere, patient outreach, publichealth, case studies, etc.

You may also want to bring in people rom outside the organization who have therelevant expertise. This can include hemophilia treaters, laboratory specialists,educators, volunteers with experience in communications, and public healthspecialists.

As the campaign gains momentum, remaining open to the integration o new members in the team is important in order to build alliances and bene t rom morepeople who can help.

Even though there is a project coordinator, the campaign cannot rest entirely onone persons shoulders. A campaign must be able to rely on the participation o allmembers o the project team.

I the patient outreach campaign, or a part o it, is conducted in a remote area, a local leader will need to be recruited to take care o logistics (reserving event space,coordinating snacks and re reshments, organizing transportation or patients,etc.), local media relations, and budget administration, since some things cannotbe e ciently taken care o rom a distance.

Step 4: Gain support o the bleeding disorders community

It is important to obtain the support and help o key organizations that representthe bleeding disorders communitypatient and medicalbe ore launching a projecton patient outreach. Without their support e ective outreach will be di cult and

it will be hard to make changes to improve care or people with bleeding disorders.Key partners in patient outreach are:

Patient organizations or people with bleeding disorders Hemophilia treaters and treatment centres Health authorities and public health agencies


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Other supporters may include other government agencies, blood collectionagencies, pharmaceutical companies, etc.

In order to persuade stakeholders to support and participate in your campaign,the goal and bene ts must be clearly communicated, as must the roles andresponsibilities you would like each o them to take. Without the support o key partners, it will be di cult to complete the campaign. Once involved, all partnersmust be in ormed regularly o outreach activities, campaign progress, and results.

It is essential to share in ormation on the campaign with the medical community involved in bleeding disorders, since they will be responsible or screeningindividuals identi ed through outreach. Their uture workload will also be a ectedas more patients with bleeding disorders are ound. Collaboration between thehemophilia organization and medical community is a major actor in success ulpatient outreach.

Example: In Venezuela, the Venezuelan Association or Hemophilia worked very closely withthe physicians at the National Hemophilia Centre in Caracas when they started their outreach projects. The physicians not only provided in ormation on any known patients, but also reviewedcompleted patient questionnaires, and accompanied the patient association on visits to regional hospitals to establish contact with local physicians and help encourage laboratory personnel andother healthcare pro essionals to participate in the activities. The National Hemophilia Centrewas responsible or coordinating the medical and laboratory aspects o the campaign.

Government authorities (namely the Health Department) should be kept in ormedo the campaign, since they will also be interested in the data that will be collected.They can sometimes help by providing resources ( nancial, human, and/orin ormational), encouraging hospitals and physicians to participate, or assigningcivil servants to help ensure an e ective campaign.

Step 5: Build alliances

For a success ul campaign, it is important to identi y and build alliances with thegroups, organizations, and individuals who have thorough knowledge o the targetpopulation. These include:

Local physicians and hospitals Religious groups Charitable organizations Community organizations Red Cross/Red Crescent Societies Other organizations working in preventive health

It is important to develop alliances in the local medical community, includingwith physicians and hospital medical sta , in the region targeted by the outreachcampaign. The local hospital can provide key support in the outreach campaign. Forexample, it could help publicize the campaign and provide space, equipment, andsta or diagnosis activities. There must be good coordination with the physicianin charge and the rest o the medical sta .

Alliances with other community or patient groups are also valuable, and canbe a great source o support or the campaign. The more that is known about a community, the easier it will be to understand its needs and norms. For example,cooperation could be sought rom support groups, religious groups, charitableorganizations, or non-governmental organizations working in preventive health.


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Once these groups are identi ed, their leaders must be convinced o the importanceo the patient outreach project. In order to obtain their support and participation,it is important to properly communicate the goal and bene ts o the campaignand explain exactly how you would like them to help. Given their knowledge o thecommunity, their involvement will increase your ability to reach target populationsand help you identi y people who could assist in the campaign.

Example: When the Hemophilia Foundation o Minnesota/Dakotas (HFMD) set out toidenti y people with hemophilia in Native American communities, the tribal elders played akey role. To build alliances with Native American communities, the HFMD created a Native American advisory committee or the project. The advisory committee made recommendationsto the HFMD on the best outreach methods to use in these communities and also introduced HFMD volunteers to the community leaders.

As with the project team, it is important to ensure that new allies receive basictraining on hereditary bleeding disorders and the campaign itsel so that they properly understand the importance o the outreach project.

I things work well, these allies may continue to be involved in the bleedingdisorders community a ter the campaign has ended.

Tips for overcoming resistance

In some instances, outreach projects may meet with some resistance,particularly in the case o HIV/AIDS screening. Con dentiality o patientin ormation is also a major issue or both physicians and those who couldpotentially be identi ed as having hemophilia or another bleeding disorder.Resistance can be mani ested as hostility, deception, delays, divergence,confict, impatience, etc. Un ortunately, there is no easy way to overcome thestereotypes, ears, distrust, or misperceptions that may surround bleedingdisorders in your target population. There ore, each situation must be care ully analysed and approached. The ollowing are a ew ways to reduce resistance:

Submit the project to those who are interested in order to bene trom their contribution and enable them to use it and adapt it totheir situation.

Highlight the advantages o patient outreach without obscuring thedi culties or shortcomings.

Reduce the unknown as much as possible. Reduce sources o insecurity as much as possible. Find credible support. Inspire trust in your target population, through both the image o

spokesperson and the quality o the project. Demonstrate openness to the possibility o review in the case o

di culties. Be receptive to avoid alling victim to power games with those who

are not part o the project.

Adapted rom: Collerette, P.,G. Delisle, and R. Perron. Le Changement organisationnel : thorieet pratique. Qubec : Presses de lUniversit du Qubec, 1997.


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Step 6: Determine your strategy

Your strategy is the approach you will take to meet your goal. It is not possible tohave a single outreach strategy that will work in all countries. Your strategy willdepend on the needs, circumstances, and available resources in your country. Thepolitical, social, and cultural context o the country (or target population) mustbe taken into considerationstrategies that are e ective in some countries may be

inappropriate or have detrimental e ects in others. You will also need to have goodknowledge about the population being targeted by the outreach campaign.

To develop a strategy you must look at all these di erent elements, along withpossible approaches and potential problems that will a ect your campaign, todetermine what path is most likely to succeed. The project team must care ully analyse the situation in order to develop the most e ective outreach strategy or a particular population, based on its characteristics and available resources.

Some questions to consider when developing your strategy include:

What is the goal or purpose o the campaign? What resources are available?

Who is the target population and how will we nd them? How will people suspected o having a bleeding disorder be tested ordiagnosed?

What data will be collected? How will in ormation on newly identi ed patients be collected, recorded,

and managed? How will we ensure participation in the campaign or activity? What support and services will newly identi ed patients need and who

will provide them?

What is the goal or purpose o the campaign?Look back to the goal you identi ed in step 1. Your strategy is ounded upon this.Is it to diagnose new patients, to build a national registry, to nd an underservedpopulation, or to raise awareness o bleeding disorders among general practitionersand others?

What resources are available?Look at the human and nancial resources available or this campaign. This willhelp you determine the scope and complexity o your campaign.

Develop a list o the major activities involved in the success ul completion o youroutreach campaign. Indicate the number o people you will need and the range o expertise o each.

Be ore starting a campaign, you must make sure you have enough nancial support

to carry out the outreach activities. Some governments, institutions, and patientor community organizations can help by providing resources such as meetingrooms, expert or technical assistance, volunteers, or grants. For example, you couldcontact:

Colleges and universities Churches/synagogues/mosques/temples Community health organizations Public health agencies and organizations



Hospitals Blood collection agencies Hemophilia treatment centres Pharmaceutical companies World Federation o Hemophilia Philanthropic oundations

For more in ormation on undraising, consult the WFH publication Fundraising .

Who is the target population and how will we fnd them?I you are conducting a campaign to identi y patients, consider what sources o in ormation are available. Sources include registries or records kept by treatmentcentres, physicians, hospital emergency departments, blood banks, or patientorganizations.

Contacting known patients to see i they have other amily members who may havea bleeding disorder is also an e ective strategy. At the time someone is diagnosed,other cases o hemophilia in the amily may not be known. Discussion with patientsand their amilies, asking the right questions, may reveal that other amily membershave or have had bleeding problems that were never diagnosed. The amily network

is always a good place to start. Example: In the Republic o Georgia, one o the challenges was contacting patients living inremote areas. Volunteers romthe Georgian Association o Hemophilia and Donorship conducted targeted door-to-door searches to fnd patients.

How will people suspected o having a bleeding disorder be tested or diagnosed?I your outreach campaign involves diagnosis and testing, you need to think abouthow this will be done. Will individuals presenting with symptoms be directed to visit a treatment centre to be tested? Will diagnosis clinics be organized? Will therebe a medical team making home or community visits to per orm testing?

It is important to consult the medical team and establish basic medical criteria be ore per orming tests in order to avoid unnecessary testing o people who do notdisplay any symptoms o hemophilia, von Willebrand disease, or other bleedingdisorders. The products required to per orm tests are costly and resources must notbe wasted. Furthermore, it is possible to become discouraged when many tests areper ormed but only a ew patients receive a positive diagnosis. Sometimes nancialsupporters and other partners also see this as a lot o work and resources or ew results. For more in ormation on diagnosis, see the WFH laboratory manual Diagnosis o Haemophilia and Other Bleeding Disorders.

Another consideration is how you will motivate physicians and medical personnelto get involved. In some cases a prominent doctor may be able to encourage othersto get involved; in other cases you may have to provide an incentive.

Example: In the Republic o Georgia, general practitioners received US$10 when a patient they re erred was diagnosed with hemophilia.

How will in ormation on newly identifed patients be collected, recorded, andmanaged?Consider what data should be collected and how the in ormation will be collected,recorded, and managed. There needs to be a registry in place and a process orupdating and continuing to add newly diagnosed patients to the registry. I this isnot well maintained, there is no point identi ying the patients in the rst place.


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How will you ensure participation in the campaign/activity?Consider how you will publicize and promote the campaign, and how you willensure that people will show up. Think about reasons why someone may havedi culty getting to the activity, and ways to overcome them. For example, shouldtransportation be provided? Are babysitting services needed? Should the activity take place on the weekend when most people are not working?

What support and services will newly identifed patients need and who willprovide them?Keep in mind that a diagnosis o hemophilia or another bleeding disorder can havea major impact on the li e o an individual and their amily. Consider:

How are the results disclosed to the patient and amily members? What basic in ormation about treatment and challenges should be given

at the time o diagnosis? What services and educational resources are available to newly diagnosed

patients? How is the emotional impact o the diagnosis handled? Who can give advice on healthy living, including exercise and emotional

support? Who can explain the patients rights (local legislation and available health

services) and suggest ways to deal with issues that may arise? The patientand the amily may ace problems related to con dentiality, stigmasregarding hemophilia, and discrimination.

Step 7: Develop an action plan

Once you have determined a strategy or how you want to approach the campaign,develop a detailed action plan outlining speci c objectives or activities you need todo. Having a plan ensures that everyone is working toward the same common goaland ensures that no key steps are orgotten.

Your objectives should be speci c and measurable. At the same time, they mustbe fexible. It is a good idea to regularly review the objectives as the campaignprogresses.

Possible objectives or activities include:

Setting up meetings with key stakeholders to persuade them to participatein the outreach campaign;

Developing a questionnaire to gather in ormation rom patients; Organizing educational workshops to in orm newly diagnosed patients

and their amilies about bleeding disorders; Organizing a telephone campaign to contact already identi ed patients to

see i they may have relatives with a bleeding disorder who have not beendiagnosed;

Holding a testing day in one or several cities where people suspected o having a bleeding disorder can come or diagnosis;

Conducting a workshop to educate physicians about bleeding disorders; Creating a publicity campaign to raise awareness about the outreach

project or bleeding disorders in general; Developing posters and publications about bleeding disorders.


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Communications and publicityStrong communications and publicity expertise is essential to success ully promotethe campaign. A communications plan with a concise message and appropriatecommunication tools need to be developed. Communications tools may includeposters, pamphlets, educational materials, in ormation booths, press releases,newspaper articles, and radio and television interviews.

Example: In New Jersey, the Hemophilia Association o New Jersey (HANJ) identifedhealthcare pro essionals working in schools and on university campuses, amily doctors,obstetricians and gynecologists, and healthcare organizations in target communities and sent them letters introducing the registry project. In ormation booths were set up at health-relatedevents in order to raise awareness, generate dialogue, and develop contacts.

HANJ developed a webpage and publications to increase awareness and access to in ormationon women and bleeding disorders. In ormation was sent to schools and health organizations. A seminar on bleeding disorders was developed specifcally or physicians who see a large number o emale patients.

One o the keys to success ul communications is to know your target audience andadapt your communications accordingly.

Example: The Venezuelan Association or Hemophilia (AVH) developed and distributed posters describing hemophilia using simple language and adapted it to the regional culture, toraise awareness and reach more people. However, with experience, AVH ound that when very general symptoms were described, people o ten wanted to be tested even though their problemwas not related to hemophilia.

The media (newspapers, radio, and television) are o ten valuable or helpingcommunicate basic acts to the public and publicizing the patient outreachcampaignmedia relations should be part o the communications plan. However,be ore doing any media relations, make sure you have a well-developed messageand a strong spokesperson who can present your message well.

On the day o an event, it is important to have posters and signs that clearly indicatewhere the event is taking place. Sometimes putting arrows on the foor or walls toguide the way is help ul. I volunteers are available, they can welcome people andbring them to the right place.

It is also important to have publications available to in orm those in attendanceabout hemophilia and/or other bleeding disorders. (For example, the WFH bookletWhat is hemophilia?is available in English, Spanish, French, Russian, Arabic, andChinese.) Medical publications intended or physicians and medical specialiststend to be too complex or the general public but would be use ul or a medicalaudience.

Planning or the day o the activity

Depending on your event or activity, you may need to arrange or space at a hospitalor clinic or testing, or rent a room or a workshop or in ormation session. You willalso need to make arrangements to have all the necessary materials available in timeor your event.

Plan in advance to make sure you have everything you will need on the day o theactivity. Compile a list be orehand o everything that is required ( or example,posters, signs, publications on hemophilia and other bleeding disorders, pamphletson the national hemophilia organization, questionnaires, pens, etc. Be sure thathealthcare pro essionals bring the necessary materials, such as disin ectant,syringes, laboratory manuals, etc.)



Step 8: Implement the plan

Once the plan is developed, the next step is to carry it out. This involves making allthe arrangements to carry out the plan: nding and training volunteers or sta todo the work, nding a place to hold the event, making sure all the materials neededare available, and publicizing the event.

Monitor progress As you implement the plan, the project team should meet requently to make sureit is being carried out as planned and to make adjustments where needed. Forexample, a key speaker or medical specialist may unexpectedly be unable to attend a workshop, someone attending an activity may have special needs, or you may needto recuit more volunteers. Continual monitoring is a way or the team to take stockand make adjustments to ensure a success ul campaign.

Common errors include:

Lack o organization Insu cient/inadequate partnerships Poor planning Unrealistic timeline and goals Inadequate training Unreliable testing and diagnosis Inappropriate communications materials

Keep sta and volunteers motivatedIt can sometimes be di cult to maintain volunteer commitment and motivationthroughout the project. It is important to ensure that they get satis action romtheir volunteer work and understand the importance o their support o thecampaign.

People volunteer or a variety o reasons. Some volunteer because they believe inthe cause or want to help people. Others volunteer or social reasons or to learnnew skills Once volunteers have been recruited, the key is to keep them. Thebest way to ensure that volunteers maintain motivation is to make sure that they get satis action rom their volunteer work and do not eel taken or granted.

Mohamed Aris Hashim, Recruiting and Retaining Volunteers(WFH, 2003)

Example: The main challenge aced by the Hemophilia Federation o the Mexican Republic (FHRM) team was loss o motivation among volunteers. In order to make up or this lack o human resources, the FHRM asked 20 newly identifed patients to help by having each one

fnd and re er one new patient. Since the patients o ten had a parent or distant relative withhemophilia, or a riend with hemophilia met during a hospital stay, the FHRM was able toachieve its target number.

There needs to be good communication among the project team, sta , and volunteers. People are much more motivated i they know what is expected o themand are kept in ormed o what is going on. Each persons responsibilities shouldbe clearly stated and everyone should have a clear understanding o the project andtheir role in it.


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Example: The Hemophilia Foundation o Minnesota/Dakotas in the U.S.A. organizedoutreach training sessions or volunteers, so that they would be profcient at explaining the project, its objectives, and the overall action plan.

Receiving praise and recognition is an excellent way to keep people motivated.When an objective or activity is success ully achieved, be sure to congratulate thoseresponsible.

Ensure high turnout or the activityGood publicity is critical to ensure a good turnout and success ul campaign.People o ten dislike having their blood taken or do not want to be told that they are sick; some situations may require intensi ed e orts or incentives. Patients andindividuals who may have hemophilia may need to be persuaded to participate inoutreach activities by describing the importance and bene ts o the campaign.

Example: In Mexico, the Hemophilia Federation o the Mexican Republic (FHRM) distributed 250 posters on the outreach and patient registry initiative to public hospitals in the larger citiesin the Jalisco region. Several patients who were not registered contacted the FHRM a ter having seen these posters and completed the questionnaire.

Also take into account and plan or actors that may prevent people rom showingup. These include:

Time off work: Sometimes, individuals may not be able to a ord or get time away rom work. A grant or small remuneration may enable such individuals to participate.Holding events in the evening or on weekends, or even in ormation tables over thelunch hour during the workday, can enhance a campaigns e ectiveness.

Transportation: In some areas, distance or travel costs may be obstacles toparticipation. There are a number o ways to overcome this. Depending on resources,rent a van to pick up the people who live the arthest away, coordinate a ride-sharingsystem, or o er to reimburse transportation costs (train or bus ticket).

Childcare: Some people cannot come on a given day because they cannot leavetheir children home alone and there is nobody available to care or them. Achildcare service will help ensure the ull attention o parents during presentationson hemophilia, von Willebrand disease and/or other hereditary bleeding disorders.In ormation sessions are more e ective without restless or crying children. I testing will be provided onsite, this would also encourage parents to bring alongtheir children or testing too.

Language: When a di erent language or dialect is spoken in the target region orcommunity, it is best to hire an interpreter to avoid any communication issues orharm ul miscommunication and misunderstanding.

Have a contingency plan

When developing and implementing the plan, the project team should anticipatepossible challenges and obstacles in advance and plan solutions or how to dealwith them as they arise. It is important to compile a list o everything that couldrepresent an obstacle to the smooth conduct o outreach activities and develop a contingency plan. Think o how you will communicate problems and changes tothe campaign plan, the roles and responsibilities o team members, and instructionsor volunteers.



Document progressIt is important to document the progress and challenges encountered throughoutthe outreach campaign to be able to track where resources were spent and to learnwhich activities were success ul and which ell short. Documentation should bekept or uture re erence or outreach initiatives. These records can be use ul toother organizations wanting to develop a similar campaign in another region orcountry, thereby sharing the best practices and lessons learned.

Step 9: Follow up

Once new individuals have been identi ed through the patient outreach campaign,ensure that they have access to treatment and go to the hemophilia treatmentcentre or regular check-ups. It is also important or them to be connected to thehemophilia organization and bene t rom its support and services.

Example: To ensure that newly diagnosed patients received adequate treatment, the hemophiliatreatment centre in Tbilisi, Georgia, ollowed up by calling them i they did not visit the centrewithin three months o their diagnosis.

Another key area or ollow-up is to make sure that the patient data collected isentered into a registry and that the registry is maintained. For more in ormationon developing a national patient registry, please see the WFH Guide to Developing a National Patient Registry.

Also remember to thank all those who helped make the campaign a success. Sendthank-you letters to volunteers and those who helped und the campaign.

Step 10: Evaluation

At the end o the patient outreach campaign, the project team needs to do a thorough evaluation to measure its success and shortcomings. A proper evaluationwill help determine which activities produced results, which were less e ective,and which would improve subsequent patient outreach campaigns ( or example,on other bleeding disorders or other public health matters). I the strategy hasbeen well planned, evaluation will rein orce the organizations integrity and theimportance o the outreach project and the data collected. This is very valuableor maintaining key partners and attracting new supporters to help advocate andlobby or comprehensive care or hemophilia, von Willebrand disease, and otherbleeding disorders.

Example: At the end o its outreach project, the Hemophilia Federation o the Mexican Republic had identifed 614 people with hemophilia living in the Jalisco region, 72% o the estimated

total, and had up-to-date in ormation on 74% o all known patients in the region. Example: In the Minnesota/Dakotas region o the U.S.A., because newly identifed patientswere not distinguished as such in the registry, it was di fcult to assess the actual results o the project, and this led to the projects termination.


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The evaluation should assess the original goal o the patient outreach campaignand each activity, including resources invested and outcomes. For example:

Was the expected number o new patients identi ed? (This is an importantmeasure o success.)

Was in ormation gathered on newly identi ed individuals? What knowledge was gained by participants as well as organizers? Did members o the organization, project team, and volunteers work

e ectively together? What unexpected challenges arose and how were they dealt with? Were individuals re erred to organizations, treatment centres, and available

services and resources? Were outreach activities e ective? (Review all aspects including telephone

or mailing campaigns, distribution o publicity materials such as postersand pamphlets, requests or in ormation rom newly identi ed patients ortheir physicians, etc.)

Were the actual costs o the campaign within the projected budget? What ollow-up has taken place? What aspects could be improved or uture outreach activities? Are there potential new partners in patient outreach and improving

hemophilia care?

Evaluation provides valuable quantitative data as well as qualitative in ormation,such as how patient outreach with subsequent care substantially improves health,quality o li e, and productivity or people with hemophilia and other bleedingdisorders.


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Section 3

Case studies on patient outreach

Case studies are a use ul way to present success ul models o patient outreach andregistry campaigns, with best practices or both quantitative results (number o patients identi ed) and/or qualitative outcomes (integration o new patients in thenational hemophilia organization or improved care). The collection o qualitativein ormation is important because it provides descriptions and explanations o localcontextsthis knowledge is essential in strategy development.

The ollowing cases present di erent outreach strategies and experiences, and someo the lessons that have been learned.

Venezuela: Partnership between patient andmedical groups

At the beginning o the 1990s, the Venezuelan Association or Hemophilia ( AssociacinVenezolana para la Hemoflia, AVH) wanted to know how many people with hemophilia were living in the country and where they were located. Until that time, the only data compiled were noted in a small notebook by physicians at the National Hemophilia Centre ( Centro Nacional de Hemoflia,CNH) in Caracas, which listed 495 patients.However, the in ormation was limited and in most cases had not been updated sincethe patients rst, and sometimes only, visit to the hemophilia centre.

The AVH began seeking ways to track down and con rm the patients listed.Collaboration with the medical community was key in this endeavour. Physicianssearched their medical archives or the names o patients. Using this in ormation, AVH volunteers searched or each individual with the goal o gathering basic patientin ormation and developing a national patient registry or hemophilia. The processwas very slow, however, and very little in ormation was ound.

The AVH and physicians at the CNH decided to develop an outreach campaignto identi y patients more e ectively, add them to the patient registry, and educatethem about treatment and care. The outreach campaign was initially calledOperation Progress and became Operation Consolidation in later phases. Theprimary goal o the campaign was to determine the precise number o people withhemophilia in Venezuela in order or the AVH to properly represent patients tohealth authorities when advocating or better treatment and care. In all discussionsto date with government representatives, the AVH was asked how many people in

the country had hemophiliahaving an accurate gure is important or e ectiveadvocacy because it is the starting point or guring out the resources that will beneeded to provide care or the hemophilia population. Another goal o the outreachcampaign was to consolidate the countrys hemophilia community.

They started by determining the in ormation that would be use ul to the AVH anddeveloping a questionnaire. The patient in ormation section o the questionnairewas completed by patients who came to the medical clinics or meetings with AVH members, and physicians then completed the medical in ormation section.Since some patients did not know how to write, volunteers were always presentto help them answer questions. The AVH then orwarded the in ormation to



CNH physicians to veri y and ensure a proper, accurate diagnosis (several recently diagnosed individuals did not know i they had hemophilia A or B and sometimespatients reported the wrong blood type). Mutual trust was key in this collaborationbetween the AVH and CNH.

At the same time, regional chapters o the AVH began to orm throughout the country and began orwarding in ormation about new patients to the national hemophilia organization. In each region, one person was designated to ensure that all knownpatients completed the questionnaire and sent the in ormation to the AVH.

However, there remained a number o people living with hemophilia who were notyet diagnosed and there ore had no access to treatment. Visits to the regions wereorganized to test people suspected o having hemophilia and make an accuratediagnosis. These regional visits were also a way to educate patients and amiliesin outlying areas about hemophilia and the importance o belonging to anorganization such as the AVH.

AVH leaders accompanied by CNH physicians involved in the project madepreliminary visits to regional hospitals to establish contact with local physicianswho knew individuals presenting with symptoms or with a amily history o hemophilia. They also met with healthcare pro essionals who could play a key rolein persuading patients to attend an outreach and diagnosis workshop sometime inthe uture and eventually treat newly diagnosed patients. Contact was also madewith the laboratory personnel to ask them to participate in outreach activities ( orexample, by taking the blood samples, storing them under appropriate conditions,and sending them or tests in instances where testing could not be per ormedonsite). The CNH was responsible or coordinating the medical and laboratory aspects o the campaign.

The local organizing committee (project team), composed o patients and physiciansinvolved in regional AVH chapters, was responsible or inviting patients and theiramilies, as well as individuals suspected o having hemophilia, to the testing day.The AVH developed and distributed posters describing hemophilia using simplelanguage adapted to the regional culture, to raise awareness and reach more peoplewho may unknowingly be a ected.

With experience, the AVH ound that when very general symptoms were described,such as nose bleeds or bleeding gums, there were o ten several people who wantedto take the tests even though their problem was not related to hemophilia. Also,in order to target people who were more likely to su er rom hemophilia, an agelimit was sometimes imposed ( ew people with untreated hemophilia live to age 50,or instance). For this campaign, the target population was there ore young maleswith symptoms o hemophilia, their mothers, and adult amily members withouta con rmed diagnosis.

Other publicity tools included advertisements on popular regional radio stationsand local television stations and in local newspapers; posters on hospital bulletinboards and in pharmacies; and in ormation distributed through churches orcommunity organizations. In Venezuela, radio seemed to have the greatest reachand was most e ective in drawing people to participate in the campaign.

On the diagnosis day, basic in ormation on hemophilia (including educationalpublications rom the WFH) was distributed. The AVH showed a video onhemophilia ollowed by a discussion period during which participants could askquestions as well as express their doubts and ears to physicians and AVH leaders.Once the tests were conducted and diagnosis completed, patients were contacted by their physician, who was in charge o conveying the diagnosis. The local chapters o


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the AVH then contacted the patients to invite them to uture activities and explainthe importance o having their updated data in the AVH registry.

The AVH took the opportunity during visits to the regions to hold workshops tohelp patients and amilies understand that its leaders, who are all volunteers, workto de end their right to treatment and represent them be ore health authorities.New members were told about the importance o their support o the AVH andphysician involvement in order to achieve the best treatment or all. Individualswith bleeding disorders and their amily members learned about how they couldplay a part in their organization and help achieve common goals.

The AVH outreach campaigns led not only to the identi cation o the vast majority o people with hemophilia in Venezuela, but also to uni ying and strengthening Venezuelas hemophilia community, which is now one o the strongest and bestorganized in the world. The amount o in ormation collected demonstrates the AVHs strength and caliber. Today, more than 2,700 individuals with hemophilia, von Willebrand disease, and other bleeding disorders are registered in Venezuela,and about 60 new patients are identi ed every year.

Furthermore, associations representing other diseases (HIV, cancer) in Venezuela are now ollowing the AVHs patient outreach model or data collection towardsimproving care or patients.

Mexico: Pilot project towards a national registry

In 2001, when the patient outreach and registry project to identi y new patients waslaunched in Jalisco, Mexico, only 231 patients (41%) were known to the Hemophilia Federation o the Mexican Republic ( Federacin de hemoflia de la Repblica Mexicana,FHRM), though there were an estimated 614 people with hemophilia living in theregion. At the end o the project our years later, 444 were identi ed, that is 72% o the estimated total, with up-to-date in ormation on 74% o all known patients inthe region.

The FHRM rst chose to conduct its pilot project in the Jalisco area because ithad a well-structured patient association with 20 volunteers ready to work on theproject and physicians available to act as project consultants. The region also hada large urban population and its geography did not present any major hindrancesto communication.

Since most patients in Mexico already knew their diagnosis, ew tests had to be donecompared to other countries where many individuals had not yet been diagnosed.The challenge in Mexico was to incorporate all individuals with hemophilia into a national patient registry; until this e ort, such data had never been consolidated orcentralized. Un ortunately, although most patients with hemophilia were knownby physicians, ew were re erred to the FHRM because healthcare sta did not seethe importance o grouping patients under a national association. The FHRMthere ore had to seek out all individuals with hemophilia individually. This is why the project was titled 1,2,3 por ti, the Spanish equivalent o the game Hide andSeek.

In order to nd these new patients, FHRM volunteers met with physicians at thethree major hemophilia treatment centres in the region and asked or a list o theirpatients being treated or hemophilia. Physicians were not always willing to share thisdata, so a renowned physician in the region and a FHRM supporter helped promotethe project; he wrote to physicians in treatment centres to explain the importance



o the registry project and ask them to share their data with the FHRM. With thisintroduction, it was easier or FHRM volunteers working on the project to ollow upwith physicians and obtain patient lists. Since medical in ormation is con dential,physicians only shared patient names, types o hemophilia, and telephone numbers.FHRM volunteers then contacted the patients to complete the FHRM questionnaire,and the data collected were compiled in the national registry. The data collectionprocess sometimes took more time than expected, however, because some physicianswere still hesitant to share in ormation, or because some hemophilia treatmentcentres did not have an up-to-date patient registry and needed time to look uppatient names in the hospital archives. The FHRM also signed agreements withhemophilia treatment centre administrators to ensure that hemophilia treatmentcentres would transmit in ormation on new patients in the uture.

In addition, 250 posters on the outreach and patient registry initiative weredistributed and displayed in public hospitals in the regions larger cities. Severalpatients who were not registered contacted the FHRM a ter having seen theseposters and completed the questionnaire.

When a newly identi ed individual completed the questionnaire, a lot o emphasiswas placed on determining whether other members, living or deceased, might have orhave had hemophilia. This was a good way to nd other amily membersimmediateor distantwith hemophilia who could then be ollowed up by telephone.

The main challenge aced by the FHRM team was loss o motivation among volunteers, particularly because some members had to leave the project along theway. In order to make up or this lack o human resources, the FHRM decided to ask20 newly identi ed patients or help by having each nd and re er one new patient.Since these patients o ten had a parent or distant relative with hemophilia, or a riend with hemophilia met during a hospital stay, the FHRM was able to achieveits target number o newly identi ed patients. Each volunteer was asked to re eronly one patient, so that the task would be achievable.

Now in the second phase, the FHRM is continuing its outreach project in thenational capital region, which has a high population density. It will be mucheasier to identi y new patients there, especially since the capital has the ve largestnational medical centres in the country or the treatment o hemophilia. Withthe lessons learned rom the pilot project in Jalisco, the FHRM is consideringrecruiting university students in social work, medicine, sociology or nursing whomust complete an internship or volunteer work, to compensate or the lack o volunteers. The FHRM may also include data on emale hemophilia carriers in thepatient registry, as is already done in Ecuador and the Dominican Republic.

The FHRM learned a number o lessons rom the pilot project in Jalisco,Mexico. Travelling to patients homes to have them ll out the questionnairesrequired a great deal o time and moneybetter results were obtained by goingthrough hematologists, treatment centre administrators, and hematology clinicmanagers. It was also more e cient and economical to have new patients completequestionnaires by telephone. Generally, it was easier or patients and amilies tocomplete the questionnaire themselves. It is use ul to ask individuals i they haveany questions about the organization and its activities as well as hemophilia, andits treatment and care.

The national patient outreach and registry project in Mexico was very important todiscussions between the FHRM and Mexican health authorities aimed at providingthe countrys population with hemophilia with better access to treatment. TheFHRM succeeded in updating the data on people with hemophilia in its registry andhas seen a 100% increase in member participation at its annual general meeting.


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Republic o Georgia: Door-to-door outreach

In this small, mountainous country in the Caucasus with 4.5 million residents,the estimated number o individuals with hemophilia was 350 in 2001, but only 120 o these were known. That year, the Georgian Association o Hemophilia andDonorship (GAHD) decided to embark on a project to create a registry o patients inorder to veri y the diagnosis o those who were known and to identi y new patients

in the countrys remote areas.Be ore launching the project, the laboratory technician at the Hematology andTrans usion Institute treatment centre in Tbilisi who per ormed the diagnostictests or hemophilia was trained abroad to ensure that proper lab practices andprinciples were observed. All patients in the country would be tested at the Tbilisicentre, given the short distance between the capital and rural areas. Some o thosewith hemophilia had already been diagnosed, but the accuracy o their diagnosiswas debatable. All patients were to be re-tested to ensure they were accurately diagnosed and thus optimize their treatment. One person was also hired to manageand centralize the data collected.

The rst step o the project was to contact by telephone or mail the individuals

suspected o having a bleeding disorder that were already known to the GAHD and/or the Hematology and Trans usion Institute, and to re er them to the hemophilia treatment centre or diagnosis and assessment. From the start, collaborationbetween the GAHD and the hemophilia treatment centre was an important elemento the project. In this case, their work was acilitated by the act that they werelocated in the same building.

GAHD volunteers then contacted physicians at several hospitals to request thenames o individuals suspected o having a bleeding disorder. These patients werecontacted and re erred to the hemophilia treatment centre in Tbilisi or diagnosis.In addition, the laboratory technician and a hematologist participated in radio andtelevision programs to discuss the patient registry project and the e ort to reachunidenti ed patients.

The GAHD also sought support at the government level, and the HealthDepartment collaborated by asking medical institutions in various regions to re erpatients suspected o having a bleeding disorder to the hemophilia treatment centrein Tbilisi or testing.

An e ective method proved to be remuneration o US$10 to general practitionerswhen a patient that they re erred was diagnosed with hemophilia.

Each new positively diagnosed patient was entered in the patient registry, with carebeing taken to note the name and in ormation o amily members who may alsohave hemophilia in order to ollow up and test them as well.

One o the challenges aced by the GAHD was contacting patients living inremote areas, with whom communication was very di cult. In small villages orrural centres, GAHD volunteers conducted targeted door-to-door searches to ndpatients, staying overnight with amilies in order to continue their outreach workin villages. Subsequent analysis o the data collected indicated that, contrary togeneral population trends (52% urban, 48% rural), people with hemophilia in theRepublic o Georgia are more concentrated in urban areas (72%) than rural areas,likely due to better access to emergency care in an urban setting.



Most o Georgias roads are not paved, which was o ten a problem or transportingpeople to the capital or testing at the hemophilia treatment centre. Furthermore,it was at times a signi cant challenge to convince them to go all the way to Tbilisito undergo diagnosis, especially or those whose hemophilia was not severe andcaused ew problems. There ore, regional volunteers were designated to look orunidenti ed patients and were paid a small allowance or each new patient thatwas diagnosed due to their e orts. This remuneration was a way to encourage volunteers, o ten patients themselves, to be more active in remote areas. In certaincases, the GAHD also covered transportation ees to the capital or individualssuspected o having hemophilia so that they could all be properly diagnosed.

To ensure that the newly diagnosed patients received adequate treatment, thehemophilia treatment centre in Tbilisi ollowed up by calling them i they did not visit the centre within three months o their diagnosis.

During their outreach work, GAHD volunteers also experienced very sad situationswhere discrimination regarding hemophilia urther complicated e orts. Forexample, during a visit to a rural area, a volunteer met a amily where the ather didnot know that his son had hemophilia, although the mother and son were awareo the bleeding problem. Ashamed that she was a carrier o hemophilia, the motherand her amily pre erred to keep the sons condition a secret and hide it rom theather. The role o the GAHD is also to dispel prejudices and misconceptions by educating patients and amilies.

Along the way, the GAHD adjusted its objectives because, due to political change,the provinces o Abkhazia and South Ossetia separated rom Georgia, and thepeople with hemophilia living in those areas could no longer be reached.

The active search phase or new patients is now over, and the majority o patientswith severe or mild hemophilia have been identi ed and diagnosed. Sincein ormation on hemophilia was widely distributed throughout the country, GAHDnow expects that new patients will automatically be re erred to the hemophilia treatment centre in Tbilisi or intensive treatment, and to other re erral centres orminor treatment.

United States: Strategies or identi ying underservedpatients

Hemophilia knows no borders and a ects people rom every culture and ethnicbackground. However, in 1998, a study conducted by the Centers or DiseaseControl and Prevention (CDC) ound that certain ethnic and cultural groups livingin the United States were not as well served as others. Recognition, diagnosis, andtreatment o the condition and complications or these groups were delayed and/orinadequate.

There are multiple reasons or inadequate organization o care or hemophilia.Sometimes the cost o treatment, geographical distance rom a hemophilia treatment centre, or even illiteracy can be the cause. Transportation costs, languagebarriers, and concerns over childcare and the healthcare system in general also seemto be deterrents. The attitude o healthcare pro essionals toward people rom a certain ethnic or cultural minority and toward their belie s and language also a ectthe willingness o these individuals to consult a doctor. In certain cases, particularly or women with a bleeding disorder, healthcare pro essionals may not know how torecognize bleeding disorders.


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To ensure better access to treatment or the entire population su ering rombleeding disorders, the U.S. National Hemophilia Foundation (NHF) decided tolaunch the Multicultural Task Force (MCTF). The mission o the MCTF is to ensurethat the needs and perspectives o culturally diverse populations are addressed.The MCTF provides technical assistance to NHF chapters and treatment centresin their e orts to identi y and reach people with bleeding disorders who do notreceive the health care they are entitled to, whether they are women, rural residents,or teens. The MCTF seeks to oster relationships between these individuals andthe treatment centres, NHF chapters, and other associations in order to preventor reduce complications resulting rom undertreated bleeding disorders andconsequently improve the quality o li e o these people.

NHF chapters created a registry o people with hemophilia in Native Americancommunities, then o women with bleeding disorders in the general population.

Patient registry o people with hemophilia in Native American communitiesIn Minnesota, elders were key to the development o the hemophilia patient registry o the Native American population.

The rst task that volunteers o the Hemophilia Foundation o Minnesota/Dakotas

(HFMD) took on was to convince authorities o the need to identi y underservedpatients and create a registry o these vulnerable patient populations. They startedby determining the potential number o patients in the area and in Native Americancommunities, key data to better direct their research. A questionnaire was sent to36 primary care providers to determine how many Native Americans with bleedingproblems were treated there. Some 57 Native American patients received care romprimary care providers, rather than in a specialized hemophilia treatment centre.The HFMDs goal was to nd Native Americans with hemophilia who had not yetbeen diagnosed. The organization also attempted to identi y individuals with vonWillebrand disease in these communities.

The second step was to build alliances and partnerships with Native Americancommunities. To this end, the HFMD created a Native American advisory

committee to help them obtain the consent and support o Native Americaneldersrespected leaders in their local communities. The advisory committeemade recommendations to the HFMD on the best outreach methods to adoptin the communities. The advisory committee also introduced HFMD volunteersto the Native American community, which acilitated acceptance o the outreach volunteers and contributed to building a strong partnership. The HFMD workedwith Native American leaders to develop brochures and educational materials onhemophilia adapted speci cally to Native Americans. Native American leaders visited the local hemophilia treatment centres and were also invited to participatein annual meetings o the HFMD. Articles about the project and the developingrelationships with native American communities were published in the HFMDmember newsletter.

Next, a network was established comprising healthcare pro essionals workingin Native American communities in Minnesota and employees o the ederalIndian Health Service. Since they would be the ones in contact with patients andproviding in ormation, it was necessary to provide basic education about bleedingdisorders and the importance o multidisciplinary care or people with hemophilia.Participants were dispersed over a vast geographic territory; organizers determinedthat the best way to use resources was to bring everyone together at a central locationor training at the same time. It was more a ordable to hold a workshop and coverparticipant transportation and accommodations than to train each individual oneby one.



A curriculum was developed and participants were given a badge depicting Native American symbols and the HFMD logo to demonstrate their participation. Whilea small symbol o participation, the badge, intended or uni orms, was coveted by healthcare pro essionals and motivated them to take the training. Each workshopbegan with a traditional Native American ceremony.

The HFMD team also worked with the Native American advisory committee tobuild ties between tribal government leaders and ederal health o cials.

The HFMD also organized outreach training sessions or volunteers, so that they would be pro cient at explaining the project, its objectives and the overall actionplan. This plan could then be modi ed to meet the particular needs and contexto each community. Finally, in ormation was provided to sta at hemophilia treatment centres in the region to ensure that those providing care would havesu cient knowledge about the Native American culture.

As Native Americans suspected o having bleeding problems were identi ed, they were re erred to the nearest hemophilia treatment centre or an accurate diagnosisand medical ollow-up.

Un ortunately, it was di cult to assess the actual results o the project, becausenewly identi ed patients were not distinguished as such in the HFMD registry. Thisshortcoming resulted in the projects termination, since the nancial supporterswere not able to see the results o the project. Furthermore, HFMD chose notto identi y the ethnicity o its members, so it is impossible to know how many individuals with hemophilia in Minnesota are Native American and whether theirnumbers are proportional to the number o people with hemophilia in the overallpopulation o Minnesota.

Patient registry o women with bleeding disorders in New JerseyWhen the Hemophilia Association o New Jersey (HANJ) started its registry project in the 1990s, in partnership with three hemophilia treatment centres, only 203 women with bleeding disorders had been identi ed. However, according to

the national census at the time, there were 4 million women in New Jerseytheprevalence o bleeding disorders among women was estimated to be approximately 2%, or at least 40,000 women. Should 10% o these women have a severe bleedingdisorder, there would be an estimated 4,000 women with serious bleeding problemswho remained unidenti ed and undiagnosed. The 203 women identi ed to have a bleeding disorder were evidently a small raction o the actual number o women inNew Jersey likely to be living with a bleeding disorder.

Bleeding disorders in women are requently not recognized or diagnosed properly;un ortunately, about 600,000 hysterectomies are per ormed each year in the UnitedStates, a number o which are unnecessary because the problem is not actually gynecological, but rather an undiagnosed bleeding disorder.

A ter identi ying its target population o 4,000 women, the HANJ, with ourhemophilia treatment centres, decided to launch an outreach project with theobjective o identi ying 4,000 women with bleeding disorders who had not yet beendiagnosed. A committee o women was ormed to coordinate and work on creatinga registry o women with bleeding disorders. The womens committee was o cially recognized by the HANJ Board o Directors. A member o the Board also co-chairsthe committee. The committee also relies on the expertise o a physician specializingin bleeding disorders and a representative rom each o the our treatment centresinvolved in the project. Moreover, women with bleeding disorders serve on thecommittee, sharing their experiences and speaking about their bleeding disorder


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with other women who may be a ected. The committee meets regularly (every twomonths) and all o its activities are reported to the Board o Directors.

The committee identi ed healthcare pro essionals working in schools andon university campuses, amily doctors, obstetricians and gynecologists, andhealthcare organizations in target communities (including organizations providinghealth services to cultural or ethnic groups) in order to garner support in thelocal communities. Letters introducing the registry project were sent to these key partners and in ormation booths were set up at health-related events in order toraise awareness, generate dialogue, and develop contacts.

Next, the strategy was intensi ed by inviting medical and public health pro essionalsto address committee members during their meetings. One invitation o ten led toanother, which strengthened relationships and enabled the committee to convey itsmessage and build support.

The projects implementation involved the development o a webpage andpublications to increase awareness and access to in ormation on women andbleeding disorders. The in ormation was also sent to schools and healthorganizations, including those providing services to cultural minorities. Othercommunications tools, including a seminar on bleeding disorders, were developedspeci cally or physicians who see a large number o emale patients.

New Jerseys Department o Health and Senior Services was kept in ormed o the programs progress. It supported the HANJ patient registry campaign, andsubsequently analysed the ndings and observed speci c trends.

To ensure ongoing outreach and care, the HANJ regularly monitors the numbero women identi ed as having a bleeding disorder, as well as the number who haveaccess to the services o a hemophilia treatment centre and HANJ. Today, morethan 1,000 women receive care at the our hemophilia treatment centres thatparticipated in the program.

HANJ is now lobbying to change New Jersey legislation so that women re erredto obstetricians or gynecologists are required to be tested or bleeding disordersbe ore undergoing a hysterectomy. The proposition has not yet been passed but theassociation continues to put pressure on elected o cials.

Lebanon: Outreach campaign o coagulation disorders

Lebanon is a small country on the Mediterranean coast, with a population o 3,500,000 residents. A ter several years o war and uncertainty, economic problemsare signi cant. Approximately 35% o the population lives below the poverty lineand the average salary is estimated at $350 per month. The healthcare system ischaracterized by a predominance o the private sector over the public, which isalmost non-existent. The state budget allocated to health care is less than 2.5%.It is estimated that healthcare costs are covered by social security or 40% o thepopulation, by private insurance or 10% and by government-run unds or 20%;30% have no coverage.

Caring or coagulation disorders in this context is a challenge. Only the Departmento Health ensures people with hemophilia who do not have a social sa ety netwill receive a maximum o 0.20.3 units (U) per capita in substitution actorconcentrate. Private insurance does not cover congenital coagulation disorders, andgovernment-run unds and social security only reimburses hemophilia patients at



70% a ter several months o waiting. It is easy to imagine that ew people su eringrom a coagulation disorder take care o themselves properly when a unit o actor

VIII costs $1$1.2. Furthermore, hemophilia and other coagulation disorders arenot well understood. Few people are involved in their care. There is no dedicatedhemophilia care centre. Treatment is based on cryoprecipitate, plasma, and availableplasma-derived actor concentrates. Health care and test costs are primarily paid by the patient.

In 2005, as part o the creation o a national committee aimed at involving thestate in hemophilia treatment, the Lebanese Hemophilia Association ( Association Libanaise de lHmophilie,ALH) launched an identi cation and assessment projector individuals su ering rom a coagulation disorder in the country. The goals o this project are to manage the activities o the national committee and intervenein decisions related to the budget allocated to coagulation disorders. In order toimprove treatment, it was imperative to establish the exact number o people livingwith hemophilia in the country so that the association would know how many itwas representing in discussions with healthcare authorities. Each time the ALHwent to meet with government representatives, they were asked or the recordednumber o individuals involved and their actual problem. It was important to havethe answer.

The only data compiled up to that time were noted in a small registry o theassociation and in the registry o the governments central pharmacy that dispensesdrugs. About 100 patients were listed. The lists o the central pharmacy did notinclude any additional in ormation compared to those o the association. Thesedata did not contain the social and medical in ormation that the association needed,and most did not have an accurate diagnosis or di erentiate between hemophilia Aand von Willebrand disease.

Co-operation with the medical sector was the rst initiative. Few hematologistsresponded, using the excuse that they dont treat anyone with hemophilia. It wasthen suggested that a ree service be provided to patients, o ering them a bloodwork-up speci ying their disorder, inhibitor screen and serology test (HIV, HCV,HBV).

A pharmaceutical company agreed to und tests or 200 people, to get an idea o theincidence o inhibitors. A simple online registry was created, consolidating patientssocial, demographic, and medical data.

All patients known to the association and all hematologists were contacted by telephone and the ALH service was o ered. Recruitment was conducted by word o mouth, with each patient promoting the service to their riends and amily.

A ter being questioned by a volunteer ALH physician and being listed in the onlineregistry, a blood work-up was per ormed at the capitals central university hospitalto determine the need in coagulation actor, presence o inhibitors, and serologicalpro le.

The le o patients already known was completed, the diagnosis was corrected incertain cases, and more than 100 new patients were identi ed. Patient recruitmentonly stopped due to insu cient unds to pay or blood tests. Several amilieswho contacted the ALH or a blood work-up could not be properly diagnosed oridenti ed due to lack o unds. In six months, 92 individuals with hemophilia A were identi ed, 26 with hemophilia B, 59 with acute von Willebrand disease,17 with a brinogenemia, and 9 with rare coagulation disorders.


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A national program held over three years is currently underway in various regionso the country. This program consists o education on coagulation disordersor patients, community nurses, and primary care physicians. The ALH believesthat this program will enable the creation o regional coagulation disorder carenetworks, which will be used to identi y new cases. A undraiser is being planned tonance blood work-ups.


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ConclusionPatient outreach requires commitment, leadership, and a clear goal. Its aim is toidenti y more o the people in a given population who have a bleeding disorderbut may not know it, or who have inadequate access to the treatment and servicesavailable.

An outreach campaign requires collaboration among various partnershemophilia organizations, medical pro essionals, healthcare authorities and governmentsand a strong project team to manage it. The support o the bleeding disorderscommunity is key to success.

Planning is the most important element o patient outreachthe success o the whole campaign depends on the strength o planning. Important stepsare establishing the goal, orming a strong project team, identi ying the targetpopulation, determining a strategy, and developing a ull action plan. Keep in mindthat objectives and strategy need to be assessed regularly and adjusted in responseto di erent circumstances and unexpected challenges.

A good turnout is important to having a success ul campaign. E ectivecommunications and publicity are critical to attract potential individuals withbleeding disorders to activities. They are also essential or raising awareness amongpartners, volunteers, and the general publ

Documents

Patient Outreach Guide