Abstract
Keywords: Participatory medicine, e-patients, patient-physician communication, online communities.
Citation: Kastner K. My 8-point participatory philosophy: what makes me a participatory patient. J Participat Med. 2011 Sept 6; 3:e40.
Published: September 6, 2011.
Competing Interests: The author has declared that no competing interests exist.
Background
The first time I got a copy of my medical record, it was when the doctor handed it to me. She then wrote down which website to go to, and what not to look at because she was afraid it would “freak me out.”
Perhaps her approach suggests participatory medicine at its finest. However, I remember none of this. I know it happened, because I have the paper to prove it. What I do remember is that she spoke in a gentle voice, her lovely accent softening the results of the test — which I understood to be exactly the opposite of what it meant. What I understood from “ductal carcinoma in situ” (DCIS) was, “Cancer’s in my ducts. That’s the same as lymph nodes. That’s bad. In situ. That must mean it’s inoperable. I have to prepare myself for death. And I also need to prepare my family.” I left the office a dead woman.
Her error was one of assumption: She assumed I understood the terminology. It was a friend (diagnosed with DCIS more than a decade before) who described it as “the best kind of cancer.” Calmed, I became a student of Participatory Medicine 101. My education includes navigating conflicting and/or confusing evidence concerning treatments, facing decisions requiring interpretation by a doctor schooled in statistics and clinical trial methodology, and conflicting opinions and emotions within my family and my community.
Being participatory has given me strength and, at times, sapped my strength. Here’s what “participatory” means to me:
My 8 Points of Participatory Medicine
1. I want to learn about my health issue(s).
- I feel I have sufficient skills and capabilities to be participatory.
- I understand that, along with the learning and empowerment process, come stresses, disappointments, irritation, frustration, and exhaustion.
2. When I don’t understand something, I ask for an explanation.
- In the doctor’s office, I seek strategies to improve meaningful communication, and ask that jargon be written down so I can do my own research.
- Before a doctor’s appointment, if I’m fearful, I research my symptoms and conditions to the best of my abilities, and bring my questions with me.
3. I’ve learned to do my own research, using a combination of keyword searches, seeking out communities of interest online, talking things through within my communities, real and virtual, and, when the appointment comes, consultation with my primary care physician and/or another appropriate healthcare professional (eg, chiropractor, pharmacist, or occupational therapist).
- If I’m referred to a specialist, I repeat the above process.
4. I get copies of any and all laboratory reports.
- I likely will not understand much of what is in the report, so when reading something that worries me, I try to keep the anxiety at bay until I go over the results with my primary care physician.
- Waiting until the doctor’s appointment can be stressful, but I consider it an opportunity to learn something about my body, and to learn what to watch for in the next report.
- Where electronic health records (EHRs) allow, I ask that my comments be noted in my health records.
5. I do my part.
- I maintain a healthy lifestyle, and try to do all the “right things.”
- If I have issues (eg, with various meds or side effects) I move quickly to try to get them sorted out and to resolve them.
- I’m willing to accept help.
- I make sure to keep my primary care physician in the loop, and ensure that my comments are incorporated into the EHR.
6. Sometimes I don’t do, sometimes I can’t do.
- I make choices that aren’t/may not be in the best interests of my overall health.
- I accept responsibility for these choices and expect them to be respected.
- I accept that when I’m not feeling well enough, I can’t be as actively participatory.
7. My health care team.
- I try to establish rapport with my team of health care professionals, establishing a relationship that is mutually respectful and provides me with the best possible care, as well as caring.
- I recognize that trust is gained over time.
- I rely upon my health care professionals because of their training, knowledge, and perspective.
- My communities, real-life and virtual, are also part of my health care team.
8. I trust in myself, and to the extent possible, in my ability to make good decisions about my health care.
Copyright: © 2011 Kathy Kastner. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.
Not only is this a great list, but it is well-formatted, making it easy to read and digest. I especially like that you included, “I accept that when I’m not feeling well enough, I can’t be as actively participatory.”
My comment is that the path to reach the above 8 points is not an easy one. The emotional burden of illness and caregiving can be overwhelming, and that coupled with poor health literacy skills can make it hard to be a participatory patient or seek a patient advocate to team up with.
Lisa – thank you so very much for pointing out the burden of illness and its impact on ability to participate: so true, so important to acknowledge.
I think it’s often hard to even articulate what being ‘participatory’ means – it can be so different for each of us.
Great 101 on being a participatory patient.
Alex, many thanks 🙂
I love this! I would love to make this available on our web site. Will comply with copyright above, happily!
John, How wonderful that this is meaningful enough to want it on your website. I’m honored.
Thanks Kathy, You very clearly summarize what it takes to be a participatory patient. Phew! That’s a lot of responsibility for anyone to take on, especially when feeling scared, sick, or overwhelmed.
Kathy, this is the best explanation of what is an e-patient and what he does. I hope you have no objection to my translating it into Greek and publishing it on my blog!
In the case of Childhood Cancer, this is a great list for the parents and child to use. “Establishing a relationship that is mutually respectful” is so important, as without trust the relationship is not there and the patient isn’t getting the best care.
Becoming a participatory patient literally saved my life… too often we leave all the details to our doctor and health care team which are quite often overlooked. I learned enough with my Stage IV B cancer that I chose to disregard my MD’s advice and sought surgical intervention which he was not competent to perform but was too egotistical to admit. That was over 5 years ago.
Great info, Kathy. I am a health educator and I wish our services were sought more frequently especially because not all patients are participatory or often the Dr.’s assumption that we all have access to information in this day and age can be dangerous. Great list, will share on Facebook.
Great list Kathy! My research interest is health literacy and numeracy. People need to know they can be health-literate and you are showing how this can be achieved. Had I seen this earlier I would have included some of the areas in my questionnaire.
Kathy has offered us all a great perspective on what it is to go through the process of “becoming a participatory e-patient.”
It would be REALLY helpful for many of us to see a couple of clinician’s perspectives on what “becoming a participatory e-clinician” has meant for them.
Mike