Paying patient advisors: improvement, research, committees, teaching, coaching and speaking

[A Former User]

Hi all,

There's been a lot of activity on this persistent and challenging topic. It's an evolving issue of concern worldwide that has no universal solution.

In a short while Tessa Richards will initiate a Twitter chat about this topic. I hope you will join in. Tessa is a senior editor at the BMJ and leads the BMJs patient partnership initiative. She is also an experienced physician and living through the effects of stage IV adrenal cancer. Her passion as a patient leads in her many BMJ editorials and articles. One of my many (unpaid) roles is serving with Tessa on the very international BMJ Patient Panel, see membership at this link.

I'll post another message here when Tessa posts her invitation. If you tweet, please consider sharing your point of view. Thanks to Claude and others for contributions here within our forum. This topic isn't going to go away soon, so let's see what we can learn from each other and our counterparts in other countries!

PAN is not an advocacy organization, but we certainly have a role in helping support a wide-ranging and insightful discussion of this sensitive and sometimes divisive issue.

Thanks to all for your participation here and wherever patient advisors gather.

Best regards,
Carolyn

[A Former User]

Tessa Richards has opened a provocative international conversation on compensation for patient advisors and partnerships with her blog, "Terms of engagement for patient participation" published July 5, 2017:

As input by patients into health research, policy, service design, and medical education is increasingly sought, the terms under which they do so need clarification.

Tap on the link below, have a read, and comment online with The BMJ [British Medical Journal].

Mark your calendar to join in a TweetChat using #BMJDebate on Thursday, July 13. It's at 5-6pm British Time.

In Canada that will be...

1:30 - 2:30 pm NDT in Newfoundland and Labrador
1 - 2 pm ADT in the Atlantic provinces
12 noon - 1pm EDT in Quebec and Ontario
11-12 noon CDT in Manitoba
10-11am CST and MDT in Saskatchewan and Alberta
9-10am PDT in British Columbia.

http://blogs.bmj.com/bmj/2017/07/05/tessa-richards-terms-of-engagement-for-patient-participation/

[A Former User]

To report on the BMJ tweet chat July 13 about the "terms of engagement" for patient partnerships, here are the questions that were posed:

1. What are your experiences of being paid or unpaid for involvement?

2. Should all organisations have a policy on compensating patients for their input?

3. Should experienced patient advocates always be paid for their time?

4. If a patient’s participation is confined to talking about personal experience, should the health service pay for this? or is money better spent on frontline patient care?

5. Are there downsides to paying for their time?

6. Are there tasks which patients should not be paid for?

7. What are the dangers of a two tier system where some patients are paid for their time & others are not?

Here's a graphical analysis of participation. Three cheers for mightly influencer @annetto, aka PAN member Annette McKinnon, who also looks after PAN's social media activity.

Here's a sarcastic (and entertaining) Forbes magazine article about freebie advice requests. "You like coffee, but you love paying your mortgage."

Here's an interesting blog reacting to Tessa's July 5 BMJ blog that set up the discussion.
“The question is not if patients should be remunerated, but how."

Among many contributions by Twitter were:

• it is unacceptable to ignore healthcare professionals' regular income when it is said "Other committee members don't receive remuneration so why should patients expect one?".

• it is not possible to consider the provision of healthcare without including patients' self-care and the work of informal caregivers.

• it is important to build into projects the plan for financial compensation to patient partners with an option for patients to redirect or refuse payment.

• included in the value of partnerships are the professional skills patients bring to projects beyond their lived experience (e,g. law, design, organizing, technology, teaching, research, business, consulting, engineering, communications, marketing).

• patient leaders are often agents for accelerating improvement in care environments as well as in patient communities.

• patients who step forward to participate in healthcare improvement and research did not choose the circumstances that led to gaining their lived experience knowledge.

Also highlighted was the need to gather standards from around the world on financially compensating patient partners. Could PAN do this?

Ontario's Change Foundation paper has influenced thinking in other countries: "Should Money Come into It? A Tool for Deciding Whether to Pay Patient- Engagement Participants" LINK.