Table 2.
Alberta Support Unit Council Member Perspectives on the PAC’s Role, Member Activities, Challenges, and Facilitators.
| From a Patient Perspective, What Is the Role of the PAC? | With What Specific Activities Has the PAC Been Involved? | What Are the Challenges Faced in Being Part of the PAC? | What Works Well Within the AB Support PAC? |
|---|---|---|---|
| To bring together a diverse group of patients/family members who bring lived experience (perspective), passion and a willingness to contribute to the wellbeing of others | Give the opportunity to develop patient voice (confidence) through a variety of regular meetings. Develop competencies for members involved in committee work. Report back to PAC on related respective community activities (e.g., research projects; information from patient organizations). This helps with cohesiveness and connectedness for the PAC. Develop the Patient Registry where both patients and researchers can connect and potentially collaborate on future research projects |
The deterioration of health conditions can mean a lack of consistency of meeting attendance. The distance to travel to attend meetings face to face (which are always preferred by patients). PACs experiential nature mean sit requires time for the patient to understand the role and that their contribution has importance. A work in-progress where patients are learning as they become more involved |
A variety of members with diverse backgrounds and experience. Patients who attend regular meeting and or committee/project work have no problem speaking up. A willingness (even eagerness) to participate in projects. Professional staff and other stakeholders who contribute to the PAC are very skilled at supporting patients and adding structure and depth to conversations or related issues |
| From a researcher perspective, what is the role of the PAC? | With what specific activities has the PAC been involved? | What are the challenges faced in being part of the PAC? | What works well within the AB Support PAC? |
| To codevelop ideas, think of a problem from all sides, identify challenges and creative solutions. To ensure research, policy, and practice align with patient needs and to promote POR. To be leaders and be an example of meaningful and active patient engagement |
Give patients the time to speak while being pragmatic about length of meeting. Ensure patient engagement is meaningful to the individual. Participate in a research project at all stages, design, data collection and interpretation, and dissemination of results |
While patients can and should be engaged at every stage of research, not every activity interests every member. The changing in membership results in different levels of understanding and familiarity with projects discussed. The challenge to coordinate appropriate and timely training. Development and maintenance of meaningful activities with all members. Connection building with other groups whose members are part of their own networks |
Hearing valuable and different perspectives. Generating new ideas and seeing the diversity of work being conducted. Sharing examples of successful research projects involving patients and researchers who are members of PAC. Respect and consideration of all perspectives. Members have the opportunity to share their concerns and suggestions for improvement. Encouraging attendance at conferences |
Abbreviations: PAC, patient advisory council; POR, patient-oriented research.