Medical Peer Support enables patients to describe and listen to experiences, emotions, potential solutions, and doctor recommendations with other patients that may have similar medical issues. I believe a good Peer Support program improves patient outcomes due to:
By being peer-support vs. formal medical support, there is less fear of consequences to sharing and more variation of provided solutions. Compared to counseling or one-on-one mentoring, there is much more provided knowledge and alternatives perspectives.
As part of my requirements to get on a transplant list, I was required to join a chemical addiction support group like AA (Alcoholics Anonymous) or LifeRing. I did this to comply in spite of being sober: they said "Jump!" and I said "How High?". Because I had previous issues with alcohol, I had knowledge of my own issues and solutions. So I was able to contribute as a participant and by hosting several weekly meetings. I believe it helped some people become sober.
LifeRing has one notably different meeting: the Liver Spot. This meeting primarily focuses more on medical issues instead of chemical addiction, and I believe this medical focus enabled the improved patient outcomes as described above.
A normal Chemical Addiction meeting can not focus on medical issues due to lack of critical mass of patients (for diversity of perspective as well as understanding) and a need to spend significant time addressing the broader chemical addiction issues.
The LiverSpot is weekly with 20-50 participants in the meeeting. Over three years it seems as though 20 was sufficient and 50 is a bit too much (even with a fair number of auditors). By being weekly, people can easily miss a meeting knowing the next meeting is not that far away. By having at least 20 people, even if some do not attend a given week, there is still a critical mass to have a multitude of perspectives.
I have tried to expand the Liver Spot with both a second LifeRing meeting and with PeerZupport meetings (outside LifeRing to eleviate the chemical addiction requirement). So far these have not been successful.
There are some monthly meetings providing Medical Peer Support but the logistical aspects of these seem to provide significan weaker outcomes.
By being only once per month, it is very easy to miss a meeting and have a two-month gap. That is a long time for most people, but medically it is even more severe: a patient may miss out support when they are in a particular need that doesn't continue for that long a time. Symptoms, treatments, and state of mind may all be dramatically for the patient.
Also by being once per month, the meetings seem to have a lot of introductory overhead. Some of these meetings spend a half an hour or more having participants introducing themselves.
Related to the above (irregularity of participants and overhead of introductions) and the reasonable limit of a single meeting, there seems to be a lack of shared knowledge within the meeting. Questions that were easy for the weekly members of the Liver Spot to provide perspective on, did not seem to be answerable by any of the monthly meetings.
Overall it seems like the online (e.g. Zoom) monthly meetings mainly focused on:
This is possibly useful for some people but is fulfilling much less of a need than the ideal.
Some hospitals have monthly or even weekly support meetings. These can be useful for navigating the specifics of the hospital medical care and for providing presentations by hospital staff. In one meeting, there was a strong request for surgeons and other medical staff to explain what they do (and even had done to the participants) in more detail than possible in the hospital ward.
There are many social text forums that can provide assistance to patients. These benefit from people having time to think through an answer and possibly save/refer to it in the future. Unfortunately these seem to have significanly less weekly engagement than the online video meetings. Also some of these are unfortunately behind registration walls that prevent them from being searchable for investigating patients.
