My friend's patient advisor story

[Annette McKinnon]

My friend is an active patient and knows a lot about her health. For the last 2 years she has been on an advisory committee that her doctor has set up. The basic function of the committee is to set up an educational day so that doctors can invite all of the patients with her disease to participate in, and to raise their knowledge level. So for 2 years she has worked on this non-challenging (to her) task.

This year the big annual research meeting for this particular disease will be held in Toronto. Of all the patients on the committee only 2 want to attend, and the Dr is fobbing them off with vague excuses of too many people... etc

She would love to take a stronger stand to be able to attend the meeting but she feels if she did it would affect her access to this doctor who she relies on for care. So she is stuck, and says I can't take it on either because they know we have a connection.

This is a 'classic' example of barriers in the way of patients who want to get involved and learn more.

[Carolyn Canfield]

I'd like to congratulate the physician in question for connecting up their patients with common experiences and knowledge to share. But this is not right to fail to support some individuals who want to expand their network. The doctor should see the self interest in having such motivated and well informed patents.

This would be a great item to take up with the CMA (Canadian Medical Association). Doctors know (even if they don't act on it) that their patients are living with their symptoms, disease or condition 24/7 and 365d/yr. So the doc is involved maybe 3-4 hours max, per year. Who's the expert on what it takes to live with the symptoms and treatment?

Better care for patients can mean better connections with patients and family members dealing with similar situations. More capable patients can only mean better mentors and supporters across their networks, that just might alleviate pressures in a single practice's case load.

Thanks for this insight Annette. I'm sometimes in a position to push for such support. Your example helps me explain the case.

Cheers,
Carolyn