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

[A Former User]

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

[A Former User]

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.

[A Former User]

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.

[A Former User]

That's great news Brenda!

Bit by bit, little by little...

I'd love to hear how it goes.

Annette

[A Former User]

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

[A Former User]

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.

[A Former User]

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

[A Former User]

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

[A Former User]

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.

[A Former User]

Hi Brenda

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

d.

[A Former User]

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.

[A Former User]

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.

[A Former User]

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

[A Former User]

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

[A Former User]

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

[A Former User]

Hello All

RE the conference in Saskatoon in May. It is the AARC conference. (Canadian Centre for Applied Research in Cancer Control) assume it was another name previously. I received info about it from the CanREValue people and they straight up wave registration fee for patients/patient group representatives. They don't cover travel or accommodation.

Diana

[A Former User]

Hi Diana,

I see we've strayed from the topic heading here. I will start a new one by reposting my long item above.

We are talking about the annual conference of the Canadian Association for Health Services and Policy Research (CAHSPR) in Saskatoon at TCU Place on May 26-29. LINK

The Canadian Centre for Applied Research in Cancer Control (AARC) conference is scheduled in the same location on the two days preceeding the CAHSPR meeting.

Confusion cleared!

Cheers, Carolyn

[A Former User]

Sorry about that. Interesting that Stoon has become so popular. I translated the 26th to the 25th.

[A Former User]

Well put Carolyn. I didn’t even know about this conference opportunity from the five research groups I take part in. 🤔.healthcare is getting the benefit of our experience and expertise for free. The least they can do is cover our expenses. When I worked as a contract consultant for the Ministry of Environment, twenty years ago, I had my expenses covered plus an honorarium of $800 per Diem. 🤔

[A Former User]

Okay Team. We have identified a barrier. How do we collectively use our voice to address this issue with CIHR.

I will bring it up with Jill Dr. Bartlett. But we should talk about strategy.

This is a very important issue.

Brenda