FEEDBACK ON: CIHR Ethics Guidance on Developing Research Partnerships with Patients - Due date extension to Feb 25

[A Former User]

The CIHR is inviting feedback for this public consultation, to end on February 25th, 2019.

When I got the card about this at the SPOR Summit ,the people manning the booth were very enthusiastic about getting a lot of patient input.

http://www.cihr-irsc.gc.ca/e/51217.html

I know someone else posted this but I could not find the initial post, so I started this new one.

The guidance is a lot of reading but the language is clear. It seems to me there are areas where they are not thinking boldly. It will be great to hear other opinions. So far I am only halfway through reading it

Annette

[A Former User]

Thanks Annette for bringing this topic to our attention again.

I think this is an important document for patients and caregivers to consult. More importantly, I think we (the public) have an opportunity to weigh in on a topic that will certainly affect us all in some way in the years to come. Now that the patient partner door has been open by government, there's no going back. Through patient-oriented research, patients and caregivers will become increasingly sophisticated in their involvement with researchers, clinicians and policy makers in healthcare. Patients and service providers will continue to understand more about each other's perspective, both will receive appropriate and better training, and each will better be able to translate their respective experiences into improving healthcare outcomes.

Just recently I worked side by side with researchers and clinicians to co-design a CIHR-SPOR funded research project on family engagement and family peer support in First Episode Psychosis Programs across Quebec. Not only did I and other family caregivers co-design the grant application, we were instrumental in creating pre-conference materials and finally organized and hosted a consensus development conference where over 100 family caregivers and patients, service providers and policy makers came from all over Quebec to attend a two-day conference to build consensus among all attending participants on how family caregivers can better engage (and be engaged) in their loved one's care inside the PEP program. It was a smash success with patients and family caregivers expressing their thanks for the opportunity to work with service providers to build consensus on this important question. Service providers felt the conference provided a good forum for them to express their own perspective.

I plan to read and provide feedback to CIHR on their Ethics Guidance on developing Research Partnerships with Patients, as I believe this is a good way to make our voices heard. I hope to also give some feedback here, and I look forward to reading any feedback you all have on this document.

Have a great week

Mary Anne

[A Former User]

I'm working on my response Mary Anne and finding it hard to use their form because I don't think the same way as they do.

I'd suggest that if people are going to print it to read, or use the online version to read and respond, that you use the pdf version that has the lines numbered, because that's the way the form is structured.

Your example of a co-designed and co-produced conference for consensus building sounds like a project that went right, and not something I would criticize in the way that I am making points about the Ethics Guidance.

I am wondering about restructuring my feedback to fit into their format, which I was unable to do in the first pass. I am doing it in Word and planning to enter it into the form when I'm done. Their subheadings are a pain. Do you think it's best to track their form exactly to get the maximum effect from feedback?

To start with I dislike the title of the document so that's where I'm starting - 'CIHR Ethics Guidance for Developing Research Partnerships with Patients' sounds more aimed at researchers than at patients and caregivers. Why not use the title as it was for the CIHR Working Group - 'Ethics in Patient Engagement in Research' to be participant-neutral?

Annette

[A Former User]

So far they have about 20 responses, and they extended the date to Feb 25. I edited the first post.

If anyone has issues with Research Ethics Boards they invited people interested in Patient Oriented Research to send ideas for that as well. This was on the NL and Labrador SPPOR Support Unit webinar today

Annette

[A Former User]

LAST CHANCE to contribute YOUR INPUT on new guidelines on research ethics for CIHR-funded research that involves partnering with patients.

DEADLINE IS MONDAY February 25.

It's a long document to read, so don't leave it to the last minute.

HERE'S THE LINK

Here's what CIHR says...

In addition to providing comments on specific wording in the text, your comments on the following questions are invited:

1. Does this guidance address sufficiently the important ethical concerns in establishing meaningful research partnerships between patients and researchers? Are the reflections helpful?

2. Are there ethical concerns that are missing from the document?

3. Do you have suggestions for how this guidance could be customized for specific audiences?

The deadline to provide feedback has been extended to February 25, 2019. We welcome feedback to be submitted through our online form. You can also email comments to: ethics-ethique@cihr-irsc.gc.ca.

A summary of “what was heard” without attribution to specific individuals or groups will be posted after consultations. Feedback will inform the final version, which will be released in 2019.