CBC Radio clip on Patient-driven research

[A Former User]

Improving communication as an under explored area, when patients are asked where they want to see research.

Worth the five minutes to come and listen!

http://www.cbc.ca/beta/news/canada/calgary/programs/eyeopener/patient-driven-research-1.4221014

[A Former User]

Thanks Amy

It's good to see patient oriented research more mainstream. Dr Braden Manns has a video online that I saw once and quoted from -

Old Tweets:

How might we compare health research priorities of patients and researchers? There's a good topic for collaboration and co-design. #SPOR

Traditionally: Important, feasible were hallmarks of research. Why involve pts in setting research priorities? Because researchers are not typically interested in what pts care about

[A Former User]

Amy this is a nice succinct interview. It was wonderful to hear Braden speak about the James Lind Alliance (JLA) protocol for identifying patient priorities, see what they've done here to document partnerships for nearly eighty conditions, with over fifty lists of "top ten" priorities identified by those with the most at stake.

More application and adaptation of the JLA Priority Setting Partnerships (PSPs) are happening world wide, and in Canada outside of Alberta as well. It would be great to have a complete inventory. Visit the JLA site often. They are about to publish their report on Type 2 Diabetes (2017). And it's not just diseases and conditions of unwellness. Here is the link for the project to identify patient priorities for Patient Safety in Primary Care.

Annette, thanks for your questions about the differences between what patients and researchers identify as top priorities. A research report that nicely starts to answer that is from the great work of Sally Crowe (UK) with a background with JLA to develop, apply, analyze and critique the priority setting partnership protocol. Here is my favourite report by her and others from 2016, but please use the Erratum to replace Table 1 and Figure 1.

Anyone else know about Canadian studies to distinguish patient priorities for research? The Canadian Institutes for Health Research (CIHR)'s Strategy for Patient Oriented Reserach (SPOR) should be generating new topics and methodologies.

I hope that CIHR intends to document what's urgent, necessary and helpful that patients bring to healthcare research through SPOR. Also to track what difference this research is making to healthcare practice (knowledge translation) and the lived experience (impact).

That would be the basis for evaluating SPOR, I would think. Love to hear if you have heard anything, or have any ideas for putting patient research priorities into action.

Cheers, Carolyn

P.S. Please note my effort to help PAN become an acronym-transparency zone. Please do the same for your corner of jargon-laden healthcare. Thanks!