Input on Strategic Panning for the CIHR Institute for Health Services and Policy Research

It’s a very thought-provoking, futuristic survey. Glad to have the opportunity to provide input. Thanks Allies and Annette. Had a hard time figuring out where “education” fit into their list of health-related work professions. Would have liked a geographic demographic included as I am sure that colours one’s priorities, but, how will CIHR ever “know” that? Missed opportunity.

Hi Alies, nice yo hear you are on the board. I will take time to do this important survey today. Thanks for sharing

Still active as of today!

Good point, Kathy. Surveys are quite the fine art and hard to get right. I do think though they will get good information. At least I hope so! Alies

Bonjour Allies. It (CIHR) was indeed a very good survey. Glad I had a chance to participate

Hi Everyone: I am hosting Dr. Rick Glazier of this CIHR Institute and two Deputy Directors at 2 webinars at the Vancouver HUB office of the BC SUPPORT Unit, the webinars will be on March 3 and March 11. I have created this role - by willpower and being pushy - as Co-Chairperson of the Provincial Patient Council...it was hard work to get everyone to this table. The webinars will be led by me, as a patient partner. I am making this effort because I want patients to lead the Institute's strategic plan, not follow. Any advice is very very welcome.

Lisa, it is quite a challenge but a worthy one to have patient's lead not follow the strategic plan.

I know Rick and find him to be very open especially where patient and public involvement comes in. Having said that, he is bound by a structure that is still in the old way.

I am involved with the Primary and Integrated Health Care Innovation Network (PIHCIN). The patients council came up with some priorities. Hope these provide food for thought and may prompt some questions to ask. I would be interested to know what others think of these priorities as well.

Around how patient partners and the public might participate in research:

User Friendly Patient and Community Based Research
Patient-initiated Collaborative Research
Patient Engagement Education and Policies
Evaluation of Patient Engagement

Around topics important to us:

Patient Access to Data (development of policy)
Digital Applications as Alternatives to In-Person Care
Integrated Health Teams
Increasing Standardization of Care
Bridging Mainstream and Alternative Approaches to Health Care
Broader Definition of Health

Alies

Hi Alies: Sorry I'm so slow to respond. Your points are exactly on target. Its too easy to get stuck in the mud (the old ways) with these larger health care funders and decision makers. So I have challenged the Unit and CIHR about how they engage the public and patient partners. Some people in positions of power were unhappy with it! Its not about me, its about changing how people engage with health care in a way thats responsible to the individual and their families and caregivers but also thinks forward to the next 5 years. I appreciate the time and the suggestions you bring to the table. I am grateful for any advice the PAN can offer!

I have an issue with this point

Increasing Standardization of Care

I can see the benefit but recently read that Clinical Practice Guidelines (CPGs), which are one way to standardize care, are in fact only guidelines since they don't take patient preference and clinician expertise into account. In fact they could form a barrier to shared decision making.

Once there are guidelines or directives some doctors can take them as a rule as I found when I needed an MRI for a dental surgeon and my doctor said that the Ministry was not allowing MRIs except for x. y, z.

Also SPOR is an issue to me. It sounded so great at the outset in 2014, and it has been a cause of a lot of inclusion of patients in research, but in Ontario at least I don't see a lot of patient inclusion and involvement that influences directions and policy (and I am on the Patient Partners Working Group)

Hopefully this will improve, but what about the Federal SPOR? How do they include patients? In the new grant application guidelines for the next 5 years, Under Component #4 of 4 "Patient Engagement" it states that "patients must be meaningfully included in the governance bodies of the SUPPORT Units and on all research projects conducted by the SUPPORT Unit"

They also state that all activities must align with the SPOR Patient Engagement Framework.

What they don't mention is the Federal level. Where's the engagement there? Probably some of you know this but I sure don't.

Annette

Annette wrote: "...in Ontario at least I don't see a lot of patient inclusion and involvement that influences directions and policy (and I am on the Patient Partners Working Group)"

Hi Annette,

I contacted OSSU in October and had a productive call with Eddy Nason in early November - he said he would try to find me a research partner -- a month went by so I emailed Eddy to get an update, but did not receive a response -- I tried again in early January, but did not receive a reply.

I will email him again next week, but these are red flags.

Do you have any suggestions or connections that can update me? Am I just wasting my time with OSSU?

thanks,

Scott

So today I got involved. As a member of the Pan Canadian Patient Advisory Council I reached out to our PIHCIN Board here at home. Also talked to SCPOR. ASKED for a meeting to talk about the Advisory Council list of priorities and to talk about funding for Patient Engagement. Meeting set for Monday morning. Then got another invitation. An afternoon caucus hosted by CIHR-IHSPR and SHRF.

Got invited to Town Hall Meeting and sent an email to the organizers and asked if a patient would be a part of the conversation.... at the podium. Got a reply back asking if I would like to join the public Town Hall Meeting and then later join the Stakeholders Roundtable.

I was very pleased to be asked to join. Patient Engagement for me is about meaningful collaboration and this is part of being visible and intentionally respectfully engaged in the conversation. I was not sure if my ask would be heard but it was by four different healthcare organizations.

Hi All,

This is a very interesting thread about inclusion and meaningful patient engagement. Perfect timing with my frustration with a Primary Care Advisory Committee Meeting - talked AT, not WITH. Were PFAs tolerated because they HAD to be there?

Scott: what do you mean by “find me a research partner”?

Thanks Annette - I'm still hoping something will emerge with OSSU....we'll see.

Hi Kathy,

OSSU tries to match patients with researchers based on areas of interest -- but I've not had an update in 3 months in spite of 2 gentle reminders.

Why is it that you are not given a list of researchers looking for patient partners and YOU match up to the studies YOU know are a good fit? Why OSSU - whoever they are.

That's great news Brenda!

Bit by bit, little by little...

I'd love to hear how it goes.

Annette

I know of researchers who have asked OSSU for patient contacts also, but I heard that through involvement in research projects.

Kathy, OSSU is the Ontario SPOR Support Unit. All the provincial units have different names depending on their provincial partners. They apply for funding, but then they also need partners who match the funds

Annette

Thanks Annette. I was in research (aquatic toxicology) for a decade. My husband is a research scientist as are 3 of my 4 children. I attended a SPOR event on behalf of CCO back a couple of years. Signed up for more “action” - patients partnering in research - not another word. Disappointed. Doing some for CAPTIC (funded by CIHR) and PFA for OICR and our regional Clinical Trials..

Sent via Groupsite Mobile.

Sorry to hear that Scott. I saw a report on OSSU's first five years that will come out soon, where the situation looks positive. They have a very small staff (4) and have 17 research projects where the bulk of the inclusion takes place.

They are planning webinars and a Research Day again this year - that gets you in the room. I still have great hopes for OSSU despite the fact that I will have finished my 3 year term in March. They tell me there are many opportunities to stay involved with SPOR, but I will believe that when I see one.

I worry about being the 'black sheep' in a group and how far ahead that gets you.

Samira and I had a meeting yesterday to brainstorm for ways to encourage more patient inclusion in the new funding application for the coming 5 years.

Annette

This is great. Will you be sharing the links here at the forum?

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