Janet Cross, Administrative Director of Patient- and Family-Centered Care, from Monroe Carell Jr. Children’s Hospital at Vanderbilt describe how patient and family advisors partnered in a study exploring non-routine events.
Engaging Patient and Family Advisors in Research
Some researchers offer PFAs the opportunity to be involved on research teams in some capacity leading to deeper, more continuous, and equitable levels of collaboration. Unlike the roles and forums that were described in the previous section, Strategies for Engaging Patient and Family Advisors in Research, PFAs who serve on research teams need relevant education and mentoring before and throughout their involvement, but particularly in the beginning. Preparing for Research Partnerships offers information and strategies for providing education.
Staff liaisons are in the best position to match PFAs to research projects based on their interests and experience. Roles and examples of PFAs serving as active members of research teams are described below.
Highlight from the Field: Bloorview Kids Rehabilitation Hospital
Since 2013, Holland Bloorview Kids Rehabilitation Hospital, located in Toronto, Ontario, has been engaging patients and families at all levels of research, beyond the traditional participant role. Research Reviewers review research proposals, provide feedback, and bring the family perspective to research projects, including ethics and the feasibility of studies. Research Advisors (co-investigators) provide feedback and input during the project, as research questions are developed and studies are implemented. Research Communicators inform families about research, help make it understandable, co-create communication guidelines, and co-present internally and externally. The Research Family Engagement Committee advances patient- and family-centred research by making themselves available to research staff on an ongoing basis for consultation, providing responses to 3-5 questions posed by researchers in a rapid fire process. This process occurs at all stages of a project from idea generation to knowledge transfer.
Members of Research Steering Committees. Organizations may have committees that oversee the research studies being planned and conducted. These committees often set the research agenda for the organization and provide strategic direction and guidance for individual researchers. PFAs can be invited to join research steering committees as members.
Highlight from the Field: Children’s Hospital of Philadelphia
The Pediatric Research Consortium (PeRC) was established in 2002 as the primary care practice-based research network (PBRN) at The Children’s Hospital of Philadelphia. PeRC is dedicated to assisting researchers and their study teams meet project goals through a variety of services and recruitment approaches including the engagement of parents as board members who help determine the best approach for specific research studies. Parent Board Members serve 12-month terms, are provided with extensive training and a family centered care mentor, and are given a $300 stipend (½ upfront and ½ at the end of their term) for their participation. Email communication summarizing study objectives and highlights written in lay language as well as a REDCap survey link is sent to each Parent Board Member so they may provide an assessment of the study submission. The value of the parent voice is evident, for no prospective study is allowed to move forward in the PBRN until all Parent Board Members approve the submission.
Members of Research Advisory Councils. Most research studies establish advisory panels or councils to provide guidance and advice over the course of a project or for research conducted at the organization. These groups are typically comprised of other researchers and experts in the topic. Members may come from within the organization or from other organizations. PFAs who have experience with the research topic can be effective members. Several innovative research centers are establishing advisory councils comprised of patients, families, and community members.
Highlight from the Field: High Plains Research Network Community Advisory Council
In 2003, the High Plains Research Network (HPRN) invited community members from rural eastern Colorado to become members of a Community Advisory Council (CAC). The CAC is based on a community-based participatory research model. Jack Westfall, MD, Director of HPRN, states that it was developed to “ground HPRN research in real life context.” Members have been busy ever since, partnering in every stage of many research projects including studies on asthma, colon cancer screening, hypertension, and behavioral health. Maret Felzien, CAC member, describes that before embarking on a project, the CAC receives comprehensive education about the topic so they can be effective “in translating research and evidence into information that is local, meaningful, and authentic.” They convene in-person meetings but get much of their work done via regular, short, well-planned conference calls. CAC members are committed to ensuring that research is relevant to their communities and translating research findings into real world practice more quickly.
View several videos about the HPRN CAC at their YouTube Channel.
Read more about the High Plains Research Network community-based participatory research approach called, Boot Camp Translation, at the PCORI website.
Members of Research Study Teams. PFAs can be invited to serve as members of a research team for a study. This role requires a commitment on the part of the PFA to be actively engaged over the course of the study. Research teams meet regularly to work on project tasks and typically have work to be completed in between meetings. Because of the time commitment and the role responsibilities, PFA members should receive compensation at a level appropriate for their role.
Co-Investigators and Principal Investigators. Representing the highest level of collaboration, PFAs can be employed as co-investigators or principal investigators. This position leads the administration of a study and all phases of the research process. The role requires experience and appropriate training and compensation.
Grant Reviewer. To help ensure the relevancy and feasibility of research project proposals, PFAs may serve as grant reviewers. The patient and family perspective brings a valuable and unique view to the research question, study design, and selected outcomes and thus may increase likelihood for funding.
Highlight from the Field: Bloorview Research Institute (BRI)
BRI in Toronto, Ontario, developed a robust program where PFAs serve as Grant Reviewers. PFAs review proposed objectives, methods, and evaluation parameters before the grant is submitted for funding consideration. Feedback is provided through a written evaluation form. If changes are suggested, a consultation with the scientist is scheduled. If no changes are requested, a letter of support is issued if requested by the researcher. Download BRI’s review process tools.