Initiatives – Patient Engagement Platform

Patient/Family Registry

The Registry is an online registry tool which allows the Patient Engagement (PE) Platform to manage registered patients/members of the public who are interested in health research. The tool allows for easy management of information, displaying current research engagement opportunities, and the ability to email out to registered patients.

Type of involvement:

  • Online software management
  • Communication with P/F Registry Group

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Alberta Depression Priority Setting Project (a demonstration project)

Based on a modified James Lind Alliance for priority setting and public participation, a collaborative project with AbSPORU Patient Engagement Platform, Addictions and Mental Health Strategic Clinical Network (AMH SCN) and Canadian Depression Research Intervention Network (CDRIN) focused on gathering ‘uncertainties’ in depression research from the perspective of persons with lived experience, carers/caregivers and clinicians. Objective to have a top ten priority list as identified by those impacted by depression in Alberta. Considered a demonstration project as resources (people, money) provided with goal to evaluate input, impact and value of the PE Platform.

Type of involvement:

  • Project management, coordination, facilitation
  • Engagement tactics
  • Evaluation

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BedMed Project (a demonstration project)

Clinical research study to determine if changing the time of day that hypertension medication is taken makes a difference for patients with high blood pressure. Before the study begins, BedMed team members with PE Platform started the patient Working Group to aide in study process.

Type of involvement:

  • Recruitment for Working Group members, liaison support, PE tools
  • Review of invitation letter for patients/families with high blood pressure (hypertension)
  • Posting opportunity on P/F Registry
  • Contact with potential volunteers with initial interviews to assess fit
  • Agreement as demonstration project with PE Platform to evaluate engagement and PE support through coaching, mentoring and facilitating relationships


Late Life Issues Funded Team Grant Project (LLI): Drs Tom Stelfox (CCSCN) & Daren Heyland (Queens U) PI’s

Lead is co-PI

Type of involvement:

  • Recruitment of members of focus group to review proposed questionnaire for family members of the older elderly (,80 years) admitted to ICU.

Primary Integrated Health Care Innovation Network (PIHCIN)

Three opportunities including governance, review committee and project team member to support work of network for patients.

Also, Chronic Kidney Disease Research Team patient members requested.

Type of involvement:

  • Document review
  • Posting opportunities on P/F Registry
  • Recruitment support of potential volunteers

Can-Solve (Kidney SPOR Network)

Pan Canadian project focused on research priorities as identified kidney disease and transplant patients (James Lind Alliance partnership).

Type of involvement:

  • Education and curriculum support

Community pharmacy and asthma management

Priority setting for pharmacy and asthma management by engaging patients about their experiences with goal to develop patient-centered tool and identification of research important to patients.

Type of involvement:

  • Advice and consultation on recruitment
  • Patient engagement and dissemination