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

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?

I believe patient partners are under-utilized in terms of the skills they can bring and their contact network. Some of the barriers identified early on (power imbalance, trust, respect) are still cemented in in many organizations. Leadership recruitment needs to be rigorous and I think it's getting better but the old guard is still entrenched.

Hi Brenda

I got invited as well, wish it was any day but tomorrow Talk then

d.

Brenda, glad you had an impactful experience. I agree with Annette about the Ontario situation, I have had a number of people contact me that I put on the SPOR unit and they had the same experience as did Scott (above).

I also don't know that the SPOR federal group have any patients involved - I somehow think not.

Next I'd like to pick up on what Annette raised about standardized care. This was originally thought of about some standards of care across jurisdictions related to what is funded and what is not. For example, some provinces will fund a treatment or drug that others will not. There was a desire to see that all Canadians get the same basic level of care.

Annette's caveat about guidelines making it difficult for shared decision making is valid. The trick is to see them within a flexibility and not see them as an end point but as a starting point for the collaborative conversation.

Agree Alies. Guidelines are just that. A guide to help make a good decision. Guidelines are not enforceable laws, but, applying them does provide a due diligence defense. Guidelines are meant to be easier and faster to collaboratively revise based on real world experience.

I am at times amazed by the Champions who not only reach out but follow through with actionable outcomes. One of my champions is Janice Braden. She leads a very small staff of two, and is responsible here in Saskatchewan for overseeing the administration of Research funding for Primary Care and for connecting researchers for CIHR/SPOR. I get very uncomfortable about conversations that address the need for patient partner engagement compensation. I believe it is an important conversation... just one I have trouble starting.

As a Patient Family Partner in the SHA I have not received an honorarium in the ten years I have been doing this work. I live in rural Saskatchewan and it is a four hour drive to Regina or Saskatoon. I do get my expenses covered. So when I joined the Pan Canadian Patient Council I knew there was no funding and I would have to cover my own expenses which I am prepared to do. HQC, SHRF and SCPOR do provide a small honorarium which I have received.

When I shared the Pan Canadian Council priorities with Janice she was very clear I will receive an honorarium and she asked me to submit a budget to her to incorporate into her overall budget. But a bigger deal is CAHSPR coming to Saskatoon in May and I would like to attend. Janice has made it her mission for me to go.

My point being if Patient Engagement in Research is a priority it must be addressed through equity which includes compensation. AND DID YOU KNOW CIHR INCLUDES FUNDING FOR CONFERENCES FOR STUDENTS/STARTING RESEARCHERS BUT HAS NO FUNDING FOR INCLUDING PATIENTS.

Respectfully,

Brenda

That's a successful experience Brenda.

I am indignant about the conference funding you mention but have been doing grant reviews and have seen conference attendance for patients included in some of the applications - the strongest ones.

One thing that some researchers applying for POR grants seem to overlook is that patients are part of the peer review team, so their funding could depend on the effort they make to truly incorporate patient engagement.

I saw a grant though where the Patient partner, who is a true leader on the project was going to be compensated at a rate of a little over $7 per hour, and that's just not good enough in my point of view.

Annette

I've moved this to start a new topic on lowering the cost barrier to attend CAHSPR May 26-29 in Saskatoon

Hey, Brenda! Your posting is a great account of persistence and achievement. I share your discomfort and Annette's indignation about registration. Your example is infuriating: conference costs on patients who work for free or very minimal honoraria. We have the same passion for learning, sharing and networking as everyone else who attends conferences. We already sacrifice financially (and other ways) to contribute what's supposed to be essential for better healthcare services and policy. So we just ask for a level playing field.

I've attended a few CAHSPR conferences, thanks to good fortune with expenses assistance. Last year in Halifax at CAHSPR I made a nuisance of myself at the microphone and in one-on-one conversations with board members about lowering the financial barriers to patient partners. We are now intrinsic to SPOR and deemed required for co-produced health services and policy development / implementation / evaluation. Okay, if we are so necessary and deemed so valuable, then why isn't every effort ($$) made for significant numbers at the conference??

I asked that patient partners should be charged a subsidized nominal registration, say, $35. Then CIHR should offer a comparable travel bursary, funded just like for students for which we can apply in advance to attend CAHSPR or other research related conferences.

Instead here's what we've got for May 26-29, 2020 in Saskatoon (this is the first time for a patient policy on registration!):

Patient representatives who are employed in the healthcare system will receive 50% off the category they fall into on the registration rate card. Patient representatives who are not employed in the healthcare system will receive a flat rate of $200 for early bird registration and $250 for regular registration.

Not too many of us would call ourselves "patient representatives". Would an academic researcher say they were representing academic researchers? Hardly. So against what income do we expense our $200-$250? Oh, the grocery budget, I get it.

I respect this first try but am disappointed. Perhaps you or other PAN members might write to the new CAHSPR executive director Maggie Keresteci? I don't know Maggie personally, but her twitter presence makes it clear she is an experienced patient and caregiver who does not hesitate as a strong advocate for our respected involvement within the system. Perhaps she can champion our cause with the CAHSPR Board, once again?

The argument for offering a wide open welcome to Sask's wealth of experienced patient partners is very compelling. Worth a try? I'd relaunch my campaign but realize my voice may now carry unhelpful baggage. In any case, hope to see you and many PAN members in May in Saskatoon. Fingers crossed. Keep us posted!

Best wishes to all. Cheers, Carolyn

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