The OBRI Patient Advisory Committee (OBRI PAC) is a volunteer-led committee comprised of people living with inflammatory arthritis and other stakeholders. The OBRI PAC represents all patients enrolled in the Ontario Best Practices Research Initiative. The committee represents and articulates the patient perspective on living with inflammatory arthritis to the OBRI team, leadership, committees and all stakeholders.
Mandate
- The committee aims to regularly communicate in an open and transparent manner, through various methods including social media, newsletters, OBRI website and Patient Days, the activities of the OBRI and the learnings and research results derived from the data collected from enrolled patients. The OBRI PAC is responsible not only to report back on their activities to the enrolled patients, but to the OBRI team and all stakeholders as well.
Membership
- Membership is comprised of patient representatives of rheumatoid arthritis (RA), anklosing spondylitis (AS), and psoriatic arthritis (PsA), the Canadian Spondylitis Association (CSA), Patient Partners in Arthritis (PP), Canadian Arthritis Patient Alliance (CAPA), two patients that are enrolled in OBRI, as well as OBRI patient interviewers, The Arthritis Society (TAS), and the Ontario Rheumatology Association (ORA). From time to time we invite additional organizations to work with us, ad hoc sub-committees may be formed, or individuals may be recruited to help inform the committee on a particular issue.
- The committee is lead by a Chair who is a patient with inflammatory arthritis who oversees the work of the committee. The Chair reports to the OBRI leadership on behalf of the committee.
- The committee receives administrative support from the OBRI Team, including preparation of meeting agendas, preparation and distribution of minutes from meetings, editing memos, letters, announcements and newsletters.
Terms
- Representative patient organizations, The Arthritis Society, the ORA and the OBRI patient interviewers may nominate one representative to the committee and that representative may be changed from time to time as deemed appropriate by the organization.
Duties and Responsibilities
- All committee members shall participate in all committee activities fully and to the best of their ability. This shall include attending teleconferences, face to face meetings and OBRI meetings such as the annual research day and patient days. The committee members will make decisions based on the consensus of the group, and support and respect the decisions taken. All committee members will participate in discussions in a honest and open manner recognizing and respecting the different perspectives that each committee member brings to the group.
- Should a personal or health matter prevent a committee member from participating fully in the committees work, that committee member will communicate to the Chair their request for a period of time away from their committee responsibilities.
- At an annual face to face meeting called, the OBRI PAC will review the activities of the previous year and develop a strategic plan for the coming year. Teleconferences will be employed at regular intervals to inform the committee members of developments and issues requiring their input.