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eROAR2013: A case study on sustaining patient-research collaborative practices

Patient engagement is encouraged from the moment the patient steps into their doctor’s office and has been demonstrated to improve the patient’s overall health outcome. In recent years, the term “patient engagement” has emerged in health research and knowledge translation. A study published in the Journal of Participatory Medicine reports on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board of Arthritis Research Canada. Using a case study approach, study authors describe the planning and the event itself, report on the challenges encountered, and note reflections and solutions that are pertinent for sustaining patient-research collaborative practices.

Definition of patient engagement

According to the study, patient engagement in research varies from minimal involvement to more participatory collaboration, and is broadly understood to occur when patients meaningfully and actively collaborate at any stage of the research process, from setting the research agenda to designing the research project, collecting data, and disseminating results. The foundation of patient engagement in health research is based on:

  • the motto “Nothing About Us Without Us” from Charlton J.’s study “Nothing about Us, Without Us: The Dialectics of Disability Oppression and Empowerment”
  • encouraging citizen empowerment through participation and wider societal developments
  • activating “patient as partners” to create patient-centred care and promote shared decision making
  • meeting current research values and ethical concepts such as mutual respect

The history of the Arthritis Patient Advisory Board (APAB) 

The Arthritis Patient Advisory Board (APAB), formerly known as the Consumer Advisory Board (CAB), is comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada (ARC). Their goal is to ensure the patient perspective is represented on research matters related to prevention, treatment and self-management of arthritis. Individually and collectively, they communicate research information and findings to arthritis patients, professional organizations and the general public.

Their mission is “to participate in all components and phases of arthritis research, and serve as a bridge between researchers, people with arthritis, and the community at large.” Since 2006, APAB members have organized annual knowledge translation events called Reaching Out with Arthritis Research in Vancouver, Canada. Each interactive event includes presentations from patients, researchers and health professionals. Topics covered include practical disease management information, best practices in prevention and management of arthritis and case studies from current research.

Planning and Preparation

visual note taken by patient arranged Sam BraddAPAB collaborators were co-leaders in planning the public forum “eROAR 2013: Does a Google a Day Keep the Doctor Away?” Study authors Anne Townsend and Jenny Leese were invited to attend one of APAB’s monthly meetings for its members and in return, APAB members were able to provide feedback about research. Because of this informal, inclusive and interactive environment, decision making was a collaborative process from the beginning and based on shared understanding between patients and researchers.

APAB members and the research team agreed on the aims and format of eROAR2013. APAB members led the preparation and dissemination promotional materials for the event, including the level of language used, format and key distribution channels. Together, patients and researchers determined the number of speakers and topics covered at eROAR2013. APAB members contributed organizational and leadership skills – securing the event venue and arranging for webcasting and visual note-taking by Sam Bradd. One APAB member (who was also a physiotherapist) facilitated stretch breaks while another member (who was also a professional actor) presented research data through role-play. A patient advocate helped to moderate and stimulate online conversations about the event.

According to the study, patient leaders drove the planning process of the event, anticipating how to engage with audiences, and contributing a range of valuable resources, skills and expertise, which researchers may not otherwise have had access to. These contributions strengthened mutual respect for patient/researcher’s roles and priorities throughout the planning and preparation phase.

The event

eROAR2013 was a great success. It had 52 in-person audience members and the live webcast reached 117 total views, with 7% views from outside Canada. The online conversation on Twitter involved 42 participants. In total, there were six presentations, three of which were given by APAB members. The presentations provided different views on social media, first-hand knowledge and information on internet health resources, apps, devices and games, and connected audience members to online support groups. Together, APAB and researchers developed an inclusive, accessible and engaging event in which different perspectives and various forms of knowledge, experimental and scientific, were mutually welcomed and exchanged.

Challenges

Study authors identified the following challenges:

  • recognizing the differences in expertise, skills, experiences and priorities
  • a patient’s disease activity and life situations affected their level of engagement
  • the rotating membership in APAB means that new members will need guidance and training from existing APAB members and researchers
  • balancing between academic terminology and every-day language to promote the event
  • clarifying the expectations and responsibilities of the remote patient advocate

Conclusion and solutions

The authors of the study concluded: Building successful, effective and meaningful patient engagement in research is a multi-layered, sometimes challenging, and valuable process that continues to evolve. Success relies on relationships built over time between patients and researchers. Values and ethical considerations (e.g., mutuality, understanding, respect and diversity) must exist in the participatory space.