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Original image by Patrik Goethe, licensed under Creative Commons.
Resources and Links
POR ToolKit:
We've put together a one-stop shop for some easy-to-answer questions about Patient-Oriented Research, and additional resources for your Patient Engagement and Knowledge Translation plans:
Patient-Oriented Research (SPOR)
Refers to a continuum of research that engages patients as partners, focusses on patient-identified priorities and improves patient outcomes. This research, conducted by multidisciplinary teams in partnership with relevant stakeholders, aims to apply the knowledge generated to improve healthcare systems and practices.
Patient Engagement (SPOR)
Meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation. Depending on the context, patient-oriented research may also engage people who bring the collective voice of specific, affected communities.
Definition of a patient (SPOR)
An overarching term that includes individuals with personal experience of a health issue and informal caregivers, including family and friends.
Links to knowledge translation resources
Toronto's Hospital for Sick Children has put together a handy template for your KT planning needs:
http://nlsupport.ca/getattachment/fc77f80f-cd49-4f3a-b308-ff419ed97f21/Knowledge-Translation-Template.pdf.aspx
Other useful KT tools can be found here:
https://obrieniph.ucalgary.ca/system/files/kt-platform-tools-may-2016.pdf
Links to patient engagement resources
We've developed the following template to help with your patient engagement planning:
http://nlsupport.ca/getattachment/8dc1f539-d225-46fa-ba8d-2d06da934486/Patient-and-Public-Engagement-Planning-Template.pdf.aspx
Our local patient engagement and research ethics guidelines can be found at:
https://www.dropbox.com/s/cwuvftkqn4nngzo/Patient%20Engagement%20and%20Research%20Ethics%20Guidelines%20NL%20SUPPORT%20and%20REB.PDF?dl=0
Patients Canada has developed practical tools can help strengthen understanding and collaboration among patient and researcher partnerships.
https://www.patientscanada.ca/index.cfm?pagepath=Make_an_Impact/Strategy_for_Patient_Oriented_Research/Tools_for_Patient_Partnership_in_Research&id=76578
INVOLVE has developed a briefing note for researchers. The briefing notes explain the different ways that members of the public are involved in research. They will help you to plan, resource and support public involvement in your research. Note: In the United Kingdom they use the term public involvement, which we use for patient engagement in Canad:
http://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf
INVOLVE also offers a ‘how to do it’ resource. You can find a number of tools and examples here:
http://www.invo.org.uk/resource-centre/libraries/putting-it-into-practice/
Sample of patient engagement plans can be found here:
https://www.pcori.org/sites/default/files/PCORI-Sample-Engagement-Plans.pdf
Information on NL SUPPORT’s training and certificate programme
Check out our past webinars at
https://www.youtube.com/playlist?list=PLVaQgLEvT-WBuWezWj3T9w8Bq20T6MPrY
Information on our training programme can be found on our Training Page!
Registration is required: https://nlsupport.eventbrite.ca/
Additional information on the Strategy for Patient-Oriented Research can be found here, an overview of the nationwide SUPPORT Unit Project here, and the SPOR Networks here.
Contact information for the various jurisdictional SUPPORT Units follows:
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