Suggestions on Patient Engagement Frameworks & Pt. Engagement 2.0

[Gail Bellissimo]

Hi everyone,

I could use some collective insight from PAN members please. I have been asked to be part of a working group on Patient Engagement. The group is developing a framework, using Health Quality Ontario's Patient Eng. Framework as a template. http://www.hqontario.ca/Portals/0/documents/pe/patient-engagement-framework-en.pdf

Does anyone have suggestions/links/info/insights into other frameworks within or outside of Ontario that might help me expand my knowledge? I would be most grateful. You can DM me or reply here.

Many thanks, G.

[Annette McKinnon]

Hi Gail

I was going to jump in and comment, but when I went to the HQO website I got hung up on their strategic goal which is

"A strong culture of patient, caregiver and public engagement to support high quality health care"

I just don't see the goal of patient engagement as 'supporting' high quality healthcare, but as a guiding or influencing, being active to improve healthcare, not just 'supporting' it.

This is what the Naylor Report says about levels of patient engagement: (pg 59)

http://bit.ly/2BYIyHa

• At the individual level, patients can be supported to engage in their own care by consumer health technologies and better access to information, including their own health records.

• At the organizational level, staff can be educated to approach their daily work with respect for principles of patient and family-centred care, while also providing patients with a say in improving the local organization of care.

• At the system level, policymakers and leaders can involve patients in designing services that go beyond institutional walls and span the continuum of care. This also means engaging patient advocates - and the broader public - in a dialogue about the types of care we need now and into the future.

So that's not a framework, But I'll look for some. INVOLVE in the UK might be a good place to look.

[Gail Bellissimo]

Thank you Annette, I actually went so far as to recommend that if they adopted a strategic goal similiar to that of HQO that they replace the word 'support' with 'CREATE'. For me, in Patient Engagement 2.0 (Alies' wonderful term), that is what it needs to be. As you have accurately pointed out many times, we are funding the system, so I think we should have an equal say and the power to create a better HC system.

Thank you for these insights and please keep them coming.

G.

[Lorraine Bayliss]

I was recently asked to find patients to participate in a study on T2 diabetics ideally patients who represented a community of T2 diabetics. I am not a type 2 diabetic so passed along this request. I have removed the names but this gives you the perspective on how some view HQO's approach and why they hesitate to get involved.

Hi Lorraine

Thanks so much. I had a great chat with ? yesterday. Both of us were aligned, as we have traveled in similar advocacy circles.

We are also agreed that there is limited value of some of this for the patients, although valid in principle, they (HQO) still don't realize that they are asking for a huge time commitment for patients, yet not willing to pay / compensate them. With all the money our government throws around, it's amazing that they still don't understand this concept. Further it still seems almost like tokenism and not true partner engagement. .... but may that's just my bias.

I will connect with a few people ( w T2) to see if they're interested, but not sure how far it's going to go. I have other more compelling options we can offer.

Talk soon

Cheers

[Annette McKinnon]

I have a terrific friend with T2 Diabetes who would be a great asset on a study, and he has never been on one before.

However as a patient who has had trouble finding work in the past, and who has to deal with a diabetes related side effect and a long commute, he values his time and appreciates being compensated.

All of the current reliance on our goodwill and willingness to educate ourselves on issues that are of no practical use except to us as we interact with healthcare can be frustrating.

I'll add two links here. One is from Vancouver Coastal Health and the other is from a reference they used from the DownTown East Side in Vancouver that actually does include the voices of those most often not heard.

PEER PAYMENT STANDARDS FOR SHORT-TERM ENGAGEMENTS Created in collaboration with peers and providers BC Centre for Disease Control http://bit.ly/2nn0cLn

Peer Framework For Health-Focused Peer Positions in the Downtown Eastside

http://bit.ly/2FqMXAF

[Lorraine Bayliss]

Thank you Annette. You are a great resource. Frank Gavin and others members of the PPAWG would probably welcome seeing this material. It should be considered as material for discussion at our March meeting. This was a topic that generated a lot of interest at the PiR course.