Have you been a patient partner in research? Help validate this evaluation tool.

[A Former User]

Here is an open invitation to participate in a research project. They are looking for people who have experience as patient partners on research teams or patient members on advisory committees for research projects.

I was involved in the initial phase of the project, now published as you can see in the letter below. The more of us who contribute, the better the resulting evaluation tool. Here is what this next "validation" phase is all about.

Purpose of this study

This study aims to validate the Patient Engagement In Research Scale (PEIRS) as a tool that measures the degree of meaningful engagement of patients in health research projects. The PEIRS is designed to be completed by patient partners engaged in the research process. The term patient partners describes patients or individuals, such as their family members, friends or informal caregivers, who offer a patient perspective during a health research project. We believe the PEIRS will be useful to evaluate methods of engaging patients in research and the quality of patient engagement in research projects.

Link to participate in this study:

https://ubc.ca1.qualtrics.com/jfe/form/SV_3BM19uroXxPkX2t

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Dear Participant,

I hope you are doing well. Within the last 18 months, you participated in a study to develop the Patient Engagement In Research Scale (PEIRS). Our research team is happy to share we published the study results today in the scientific journal PLOS One. Please see attached a copy of the paper in which you have been acknowledged for your participation.

Your participation resulted the PEIRS that has 37 questions. It is designed as a practical measurement tool to determine the quality of patient engagement in the research process from a patient perspective.

The evaluation of patients’ perspectives on their engagement is an important vehicle that can be used to move the quality of engagement from tokenistic to meaningful. Our work is the first step toward quantifying how ‘good partnership’ should look when patients are engaged in the research process.

Thank you again. We are grateful for your contributions to the development of the PEIRS.

We are currently conducting a new online survey study to validate the measurement properties of the PEIRS. If you are interested in participating, and have not yet done so, please click the link below.

Link to new study: https://ubc.ca1.qualtrics.com/jfe/form/SV_3BM19uroXxPkX2t

Please let me know if you have any questions or comments.

Best regards,

Clayon​

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Clayon Hamilton, PhD

Health System Impact Fellow

Dept of Physical Therapy | University of British Columbia

Academic: Arthritis Research Canada

Government: Primary and Community Care Policy Division | BC Ministry of Health

Email: CHamilton@ArthritisResearch.CA

Phone: 778-974-4833

[A Former User]

Thanks for putting this on the Group site Carolyn.

I am one of the co-authors of the study through being on the research team. We need a large number of patients and caregivers, who have been partners on research teams for some part of a research project, to validate the scale.

Your help will be appreciated

Annette

[A Former User]

Hi all

The recruitment is going very slowly. Any one interested is welcome to join us for this evaluation.

Annette

[A Former User]

Thank you Susan. Really appreciate your help.

Annette

[A Former User]

I have been a PFA partner in research for many health organizations. Happy to help in this project. What next?

[A Former User]

Filled in the survey application

[A Former User]

I can complete the survey. I’m a patient partner with Canadian Donation Transplant Research Program.

[A Former User]

Great to see the response to this! Thanks, Alies