Extraordinary Opportunity to Become an Atrial Fibrillation Research Advocate

March 20, 2018

  • Summary: Opportunity for U.S. atrial fibrillation advocates to become Advocates for patient-centered outcomes research (PCOR)
  • Reading time: 3–5 minutes.

StopAfib.org is a member of the Alliance for Aging Research’s Senior Patient and Family Caregiver Network (SP&FCN) Advisory Council.

One of our roles is to disseminate information about a six-month research-advocacy training program designed to empower senior patients and their family caregivers to engage in patient-centered outcomes research (PCOR). Ideal candidates are actively engaged in advocacy in atrial fibrillation, Alzheimer’s disease, sarcopenia, or persistent pain/disability. Personal or family experience in more than one of these areas is a plus. Advocates should be based in the United States.

Our CEO, Mellanie True Hills, is involved in the program and would love to have you participate.

Below is the formal announcement of the opportunity to apply to be nominated to become an advocate mentor, followed by a Q&A to answer your questions.

If you are interested in applying to be nominated by StopAfib.org, please contact us using our Contact Us link and:

  • Provide us your name and contact information
  • In the “Your Questions or Comments” box, indicate that you would like to be a Research Advocate, and tell us why you qualify and are a good candidate

Any replies will be by email only. Thank you.

Extraordinary Opportunity to Become an Advocate

The Alliance for Aging Research’s Senior Patient and Family Caregiver Network (SP&FCN) is seeking U.S.-based advocates to participate in a six-month research-advocacy training program designed to empower senior patients and their family caregivers to engage in patient-centered outcomes research (PCOR).

We are looking for advocates who are:

  • Actively engaged in advocacy in Alzheimer’s disease, sarcopenia, atrial fibrillation, and/or persistent pain/disability
  • Excited about learning more about medical research. No prior knowledge or expertise in science or medical research is required.

We need participants to:

  • Participate in two webinars and review materials in April and May 2018 prior to the workshop
  • Participate in an in-person workshop from June 11-13, 2018 in Chicago, IL
  • Participate in a post-workshop interview to refine the curriculum in July 2018
  • Provide feedback on a revised curriculum (July-September 2018)

Participants will receive:

  • Travel, lodging, and a stipend of $400 for full participation
  • A Certificate of Completion for participating in the training
  • An opportunity to work directly with the SP&FCN Advisory Council
  • An opportunity to work and learn with other extraordinary advocates
  • An opportunity to help design a national research advocacy training program

Q & A

What is patient-centered outcomes research?

Patient-centered outcomes research focuses on questions that are truly important to patients and their caregivers. To ensure that research is patient-centered, patients and caregivers engage in all aspects of the research process, from developing research questions to disseminating results.

How would I use this training?

There are many ways advocates can engage in research. This training will help prepare advocates to serve as merit reviewers for organizations like the Patient-Centered Outcomes Research Institute or the National Institutes of Health; sit on research-related committees such as Institutional Review Boards; and partner with researchers in designing, implementing, or disseminating research. We also hope that participants bring the training back to their own communities, which will increase the number of research-savvy advocates focused on the important issues of Alzheimer’s disease, sarcopenia, atrial fibrillation, and/or persistent pain/disability.

What kind of topics will be covered?

Participants will learn the nuts and bolts of research. How are research questions developed? How does funding impact the work? How do researchers decide how to design a particular trial? Participants will also learn about the unique properties of patient-centered outcomes research. What does meaningful patient/caregiver engagement look like? How do we determine the extent to which a research topic matters to patients? What do research advocates actually do?

How do I become an Advocate?

We are accepting participants based on nominations from Advisory Council members. However, if you have not been nominated by a Council member, there still may be room for you. Anyone who is actively engaged in advocacy in Alzheimer’s disease, sarcopenia, atrial fibrillation, and/or persistent pain/disability, and who is excited about learning more about medical research, is encouraged to contact us. This is the beginning of a growing program and we look forward to including everyone.

How can I learn more?

Please contact Sue Peschin at the Alliance for Aging Research at [email protected] to learn more about this program. To nominate yourself, see the instructions above.