Extraordinary Opportunity to Become an Atrial Fibrillation Advocate Mentor

January 23, 2017

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

UPDATE:All Advocate Mentor slots have been filled. Those who have been selected will be notified. Thank you for your help. 

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 nominate 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). Ideal candidates are actively engaged in advocacy in atrial fibrillation, Alzheimer’s disease, sarcopenia, and/or persistent pain/disability. Personal or family experience in more than one of these areas is a plus.

Our CEO, Mellanie True Hills, will be involved in developing and teaching part of 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.

How to Apply: 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 an Advocate Mentor, 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 Mentor

The Alliance for Aging Research’s Senior Patient and Family Caregiver Network (SP&FCN) is seeking 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 one webinar and review materials in April 2017 prior to the pilot workshop
  • Participate in a one-day, in-person pilot workshop on May 24, 2017 in Washington DC
  • Participate in a post-workshop interview to refine the curriculum in June 2017
  • Provide feedback on a revised curriculum (July-September 2017)
  • In addition, there may be the potential for those interested to continue on with the program in a “train-the-trainer” role. Additional information on that aspect will be available after the pilot training is complete.

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. In addition, there may be the potential for those interested to continue on with the program in a “train-the-trainer” role. Additional information on that aspect will be available after the pilot training is complete.

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?

What makes this a pilot?

An effective training on patient-centered outcomes research must be designed, at least in part, by patients and caregivers. The initial curriculum is being developed by the Advisory Council, which consists of patient and family caregiver advocates, researchers, and health care providers. The pilot workshop on May 24, 2017 will utilize this initial curriculum, and a late afternoon session will allow participants to further refine and develop the curriculum. Based on that feedback, the Council will create a final curriculum.

How do I become an Advocate Mentor?

For the pilot we have limited space, so 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.

See above for how to apply.