What makes a real patient?

[A Former User]

A blog from Rosamund Snow in case you missed it

http://blogs.bmj.com/bmj/2016/07/19/rosamund-snow-what-makes-a-real-patient/?utm_campaign=shareaholic&utm_medium=twitter&utm_source=socialnetwork

[A Former User]

This is an issue as we get more involved and adept as advisors. I like Rosamund's three theories:

1. Real patients aren't supposed to have knowledge

2. Real patients don't have the ability to acquire knowledge

3. Real patients need protecting from academics

As I get more and more involved, I find some people now don't regard me as a "real patient". Ironic.

What do others think?

[A Former User]

I see the same thing happening. Now that I am a familiar face, health care people ask me about being an 'expert patient' and what I think of being considered and expert. As a former recruiter I have an appreciation of how much work it is to find people who are unheard for a variety of reasons, and who also have the interest and ability to participate. It takes more time and more creativity to find these people.

Once I said that if they were unable to engage meaningfully with willing and knowledgeable patients that it did not look good for their future with the hard to reach.

I asked the former head of the Toronto Central LHIN (Local Health Network) why I had heard nothing about what the LHIN was doing and what the priorities were over 10 years. She looked at me and said "You're not our target"

[A Former User]

thanks Annette, this is very interesting and timely. I came across this research paper yesterday and it deals specifically with this issue. I'm trying to attach it to this entry but, as a new PAN member, I'm still figuring out how so will follow up soon.

[A Former User]

Here is the link to the research i referred to:

http://bmjopen.bmj.com/content/3/11/e003583

[A Former User]

Thanks Claude

I have read that paper a few times and really appreciate the work they did. Andre Picard tweeted it recently so that got it more attention.

[A Former User]

I got it off Andre's twitter as well, he's a great person to follow and I always get a little tingle when he retweets one of mine lol.