The Moment, Continued

I’ve spent two weeks now at Cincinnati Children’s Hospital, partnering with ImproveCareNow colleagues here in developing opportunities for patient engagement. Yesterday, fellow PAC member Alex invited me to be present at an orientation for newly diagnosed IBD patients and their families. As I sat at the “staff” table, I was hit by a quiet wave of shock. It’s been over six years since my diagnosis. Over six years. One moment, I looked at a girl of about fourteen in the audience and saw my younger self in her. At the same time, I know I’ve changed in meaningful and (then) unimaginable ways since my diagnosis.

I had the unique chance to imagine myself as a new patient all over again and reflect on the ways in which I have developed. I have been a patient since April 22, 2008. Sometime between then and now I became a patient advocate, like all of my colleagues on the PAC. The transition is not at all necessary to live a successful life with IBD, not always anticipated, and can happen at different times for different people. I’ve rarely stopped to reflect on how, when, and why I transitioned into an advocacy role.

I’ve written before about patient advocacy, but to follow-up on Jennie’s recent reflections on her transition from patient to patient advocate, I’d like to share what the PAC has put together describing some of the differences between a patient and a patient advocate. We did our best to collect a diverse range of opinions, but we would love to hear your thoughts, too! We’ll be reading and responding to comments, so please take a moment to share your perspective. What do you think?

PAC_Patient Advocates and Patients (revised)

7 thoughts on “The Moment, Continued

  1. Wonderful to hear your perspective as always! A few things this makes me ponder:

    Where do patients who consider themselves strong advocates for their own health/health improvement fit into this description? Their efforts on their own behalf can lead to changes in systems too. How do we recognize that?

    And how do we as a system best help patients who want to become advocates for others get connected with all of the wonderful possibilities for doing do?

    Thanks again for sharing wonderful food for thought!!!

    • Sarah,

      I think you have a great point regarding patients who advocate for themselves. There are certainly two kinds of advocacy, as you point out: self-advocacy and community advocacy. I’m not sure I know an answer to your question. The lines of definition aren’t well marked. In my experience, I have found that patients who are strong self-advocates tend to want to advocate for others as well, but I have a very limited perspective. I too am looking for answers here…you have asked valuable questions!

      Regarding how to help patients who want to become advocates for others get connected, I think ImproveCareNow and the PAC have come a ways in making this easier by working with centers to develop educational and informational materials – but it’s certainly an ongoing and important goal!

      Sami

      • There is a conversation on Twitter that stems out of a comment that “once you really define what an engaged patient is nearly all docs would want to collaborate with them” (https://twitter.com/Cascadia/status/488859381564710912)

        I know Sami (@sami13sophia) has already jumped into this conversation. And I believe there is much more to be learned and shared and added to this tool that has been created by the PAC. I hope many more will share their insights, experiences and knowledge.

        I’m looking forward to seeing the next evolution of this tool. Nice work, PAC!

    • To answer your question Sarah about how to connect patients to the opportunities to get involve, I think that is where a mentoring system comes into play. Mentors are patients that mediate the connection. They forge a relationship with a patient and through that friendship they can point them in a direction. Often times patients get involved in a community organization like CCFA before ICN. A mentor could use the trust they build to suggest to a patient that they move up a step of involvement to ICN. As well that is where visibility comes in. If ICN and researchers want to reach kids and bring them up to research from a community organization they have to have a strong showing at those community gatherings. Whether that be taking part in Take Steps on a walk team or going to IBD Day and attending some of the seminars that they hold. If there is no community involvement and no mentoring program patients are less likely to have any association with the research network. A friendship or relationship with someone has more power and pulling weight than a physical object such as a pamphlet or email that holds little emotional attachment.

      • I agree – I don’t remember the handouts I got after diagnosis, but I remember my first mentors. Many kids/teens/adults with IBD lack access to mentors…and I think Alex makes a good point here that they may be less likely to become advocates. There will always be exceptions to the rule….but I’d bet on the general theory. I wonder if any studies have been done on this?

        Alex is doing some great work at CCHMC to build a mentoring program!!! Hopefully he’ll contribute a LOOP post about that sometime in the future 🙂

  2. It’s so great to have you in town and interacting with our other awesome summer interns! These differences sound right to me, but I’d love to hear what patients think.

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