Peer-to-peer mentoring for individuals with early inflammatory arthritis: feasibility pilot

[A Former User]

The value of peer support is well documented but some organizations are still hesitant to create the infrastructure needed for it to happen. They fall back on the usual excuses.."no budget", "liability" and "confidentiality". Social media is an amazing tool for providing informal support to patients and families in need of "real life" information they are not getting from their providers. I was excited to see that when Michelle Prince suggested a live stream of her chemo treatment to Windsor Regional Hospital they were not only supportive but posted it on their facebook page!

http://www.ctvnews.ca/health/why-a-stage-4-cancer-patient-livestreamed-her-chemo-1.3433646

Are you involved in a peer support program? Do you have concerns around peer support or see risk in online resources? Have you come across a great peer support program in your own care? Love to hear what is happening out there and how patient and family experience advisors might be able to support that work.

[A Former User]

I am really enthusiastic about peer support but have only supported 2 people in a formal way. Dr. Mary Bell, who is a rheumatologist at Sunnybrook Hospital in Toronto did some research on it.

She trained people to be mentors, with support and with a 3 day course that included working with actors who modeled some of the difficult types of behaviour.

She wants to get it incorporated into inflammatory arthritis treatment but her peers are not enthusiastic at all and it was 2013 that she did the research and held the courses.

http://bit.ly/2rjv2Ip

Peer-to-peer mentoring for individuals with early inflammatory arthritis: feasibility pilot

[A Former User]

Thanks for sharing the link, Annette. Will check it out. Interesting that Docs are not enthused. There seems to be concerns around peers giving misinformation but I would like to see some data on that. Perhaps the misinformation is more around what the purpose of peer support is and the lack of formal supports and infrastructure around it.

[A Former User]

OR...perhaps what patients find important, the patients' goals, are not the same as the Docs? Goes back, once again, to are we measuring the right things? Is medicine just about the science or also about the art of caring?

[A Former User]

In my travels, I've found peer support programs can be the opening opportunity for patient involvement and a driver for culture change that empowers the patient voice in aspects of healthcare beyond self-management..

In Japan, I've seen the first patient involvement happen by recruiting an "expert patient" for peer support as a demonstration of "standing" in a clinical setting. There are big cultural barriers for patients to volunteer or step up to active involvement in healthcare. The clinicians who have taken this initiative are very clear about the extent to which the experienced patient knows far more than nurses and physicians about how to live successfully with (for example) kidney failure or diabetes.

The Ontario Renal Network uses expert patients to engage with others with kidney failure to support the difficult decision-making about hemodialysis, peritoneal dialysis or kidney transplant. There are many other learning aids, but the thought is that talking with patients who have struggled through that decision and can reflect on their experience is invaluable.

Here is a nice article by Trisha Greenhalgh in the UK on this issue of expert patients in chronic disease.