Some topic ideas for the Evidence Alliance Patient Queries, due Sept 30

[Annette McKinnon]

Diana Ermel and I brainstormed some ideas for this chance to co-lead a research project on a patient chosen topic. We hope none of these possible research opportunities are left on the table, we are sharing with hope they might spark an idea in someone else for a question to submit. Don't worry about perfection The EA works with people at every level to get the question into a proper research query format.

Here is the call for topics from the SPOR Evidence Alliance:
The SPOR Evidence Alliance is accepting topics from patients and members of the public for our 2022 Patient and Public Initiated Research Projects.
Any patient or member of the public can submit a topic (or question) related to Canada’s health system, or a health-related topic that is of importance internationally.

Topics can be submitted using a short form found at the following link: https://sporevidencealliance.ca/submit-a-request/suggest-a-health-topic-for-research-en/

Topics submitted by September 30th, 2022 will be included in the 2022 Patient Topic Priority-Setting Exercise, which will take place later this year. The EA will select the top 20 priority topics to develop into research projects. These will be co-lead by the patient/public partner who submitted the topic.

Possible Topics

1. Communities of practice and linking patient groups

2. Are patients included in the Learning Health System? How do they play a part in this popular health systems initiative?

3. Can we do an environmental scan and analysis of the recommendations to improve health outcomes in reports that have been made various governments and have never been acted upon?

4. How can the social determinants of health be incorporated in our health data?

5. e-Referrals. care coordination, transitions in care. How are providers supporting this in the persistence of fax over electronic? How do patients, providers, health system deal with this?

6. How are patient partners engaged and their perspectives embedded in health system evaluation

7. Considering clinical information systems how are patients included? How are they evaluated? Who are they created for, ultimately?

8. Plain language though this is similar to one from last year.

9. Can we apply the First Nations principles of ownership, control, access, and possession (OCAP)– to all patient data generated for research?

10. What information about tool kits, methods and approaches to patient engagement in health care, excluding research, is out there? eg patients in governance of health organizations

11. What harms have come to patients because they do not have full and real time access to their health data, or their data have not been accessible across jurisdictions?