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Community Outreach Advocacy - pg 3

A New Model of Community Outreach Advocacy
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Community Outreach Advocates: Research

What can these advocates do?

Community advocates understand how research affects the patient and their families and therefore the community. Community advocates believe it is never too early to talk about what research is, the value of research and how much progress has been made in early diagnosis, more effective treatment and improved outcomes.

They use examples of progress using people from the community that members can understand and identify with.

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  • They deliver the message that because of science, patients are living long productive lives after a cancer diagnosis.
 

 
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Community advocates want the best science to be done, so patients in their communities may benefit.

  • Community advocates can encourage patients to participate in clinical trials by educating them about trials, how they can benefit from them, and how they can help science and future generations.
  • Many communities fear participation in research. Community advocates within those communities can be very effective in assuring its members that today’s patients are protected when they participate in clinical trials.

Every institution that conducts clinical trials has an Institutional Review Board (IRB). This board reviews every clinical trial to assure that appropriate steps are taken to protect the rights and welfare of people participating in clinical trials.

  • A Community advocate could apply to sit on this board to further insure that his or her community is indeed protected.

Each comprehensive cancer center should have a Protocol Committee and a Data Safety Monitoring Board that reviews every study. Community advocates can apply to sit on these committees and attempt to insure that if members of their communities do participate that there are practices in place to protect them. The advocate role on this committee can vary, but may include:

  • Ensuring readability and accuracy of the consent form and patient barriers to accrual.
  • Ensuring that the data presented in the consent is accurate and the patient is protected.

The Food and Drug Administration (FDA) is the agency that controls drug development. It recruits patient representatives to participate as consumer and patient advocates on many different kinds of FDA committees. Community advocates can apply to sit on these committees as well.

  • It is the job of the advocate to help ensure that the benefits of the drug outweigh the risks.
  • Advocates can focus on patient cost, QOL and ease of use.
  • Having a member of a particular community, who is respected by that community, sit as a member on any of these committees gives comfort and confidence to the community he or she represents. It creates an attitude of implied trust, as the community advocate is trusted.
Why is it important to include advocates?

Community advocates can build bridges between the communities they represent and the research community.

“Research advocacy is a vital activity for today’s patient community since patients provide a unique perspective in the research process, working with investigators, companies, and government agencies to accelerate progress against cancer."

- Wendy Selig, President and CEO
Melanoma Research Alliance -

 

  • Community advocates do not come with institutional bias and a need for ownership, so they can facilitate communication among and between different research groups.
  • This can break down ‘turf’ wars and promote collaboration.
 

New ideas are the basis for research that will impact patients. Community advocates are usually strong supporters of new ideas, and are able to inform the research community about what is important to the greater community.

  • Community advocates will ask questions others won’t ask and they will ensure the discussion is focused on patient impact and relevance to patients.

Community advocates can be a great voice not only to the communities they represent but to a larger national community to gain support for research that directly affects the patient and/or the members of that community.

  • Funders of cancer research like the Department of Defense Congressionally Mandated Research Program and Susan G. Komen encourage involvement of advocates and train them to become effective members of the program.

Community advocates have the ability to translate complicated research into “lay” language that members of their community will understand.

  • And as mentioned, Inclusion of advocates in clinical research decisions fosters public trust.
Examples of how Community Outreach Advocates can help with regard to Research:
  • Advocates can serve on grant review panels to ensure that the patient perspective is always considered.
    • Very often advocates can change the focus of a grant discussion to one researchers never consider.
  • Advocates on grant review panels help ensure that the research is important to the patient population.
    • Currently advocates are asking that more research be focused on metastatic disease as well as better tools to provide more reliable and a true early diagnosis.
  • Advocates can speak to the issue of how likely a proposal will be able to get patients to participate.
    • There have been instances where clinical trials have not been started because the advocates tell the researchers that no patient would sign up for that trial.
  • Advocates from specific ethnic communities can bring that perspective to the research discussion.
    • African Americans are very reluctant to participate in clinical trials because of a history of misconduct with that population.
  • An advocate from a particular community that has status in that community can influence community participation in studies.
    • If a well-known and well-respected member of a particular community tells that community that the study is appropriate they are more likely to believe him or her than the researcher.

 

 

 

 
 
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