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Patient engagement occurs when patients actively collaborate in health research in ways that are meaningful to them. Resources to facilitate patient engagement have been developed, but their approach is mainly toward building competencies in the early stages of forming new practices of patient engagement. This paper describes a patient-led collaboration in rheumatology, in the context of an established patient-researcher partnership. Using a case study approach, we report on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board (APAB), which is a group of volunteer advocates living with arthritis based at Arthritis Research Canada. We provide an overview of APAB’s decade-long history, describe the planning and the event itself, and report on the challenges encountered, reflections and solutions pertinent for sustaining patient-researcher collaborative practices.
The motto “Nothing About Us Without Us” underpins patient engagement in health research [
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 [
In this paper we describe a patient-led collaboration in rheumatology, embedded in an established patient-researcher partnership of over 10 years. We report on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), as an illustrative case study of patient engagement in research [
The patient collaborators were members of the Arthritis Patient Advisory Board (APAB) [
APAB [
Since 2006, APAB members have organized annual knowledge translation events called Reaching Out with Arthritis Research (ROAR) in Vancouver, Canada, for people affected by arthritis. Each interactive event includes presentations from patients, researchers and health professionals providing practical information linking research to best practices in the prevention and management of arthritis in everyday life. This event also seeks to identify patients’ research interests by encouraging dialogue between patients and researchers, enabling opportunity for patients perspectives on research to be prioritized and incorporated in future patient-oriented research at Arthritis Research Canada. Participants are invited to an event via word of mouth, advertisements posted in local community centres and newspapers, as well as notices circulated online via social networking sites (eg, Facebook, Twitter), APAB’s quarterly newsletter, email distribution lists and newsletters of national organizations (eg, Arthritis Alliance of Canada, Arthritis Consumer Experts, and Canadian Arthritis Patient Alliance. Originally an in-person only event, since 2012, electronic media has extended the reach to a national and international audience of approximately 200 participants in total (
A History of ROAR’s reach
In July 2013, APAB co-chair SK initiated a patient-researcher collaboration to raise awareness of preliminary findings from an ongoing research project titled “Exploring E-health Ethics & Multi-Morbidity” through a ROAR event [
Building on the well-established partnership with researchers at Arthritis Research Canada and drawing on their experience in hosting previous ROAR events, APAB collaborators were co-leaders in planning a ROAR event titled “eROAR2013: Does a Google a Day Keep the Doctor Away?” between August-November 2013. In September 2013, AT and JL were invited to attend one of APAB’s monthly meetings for its members (totalling 15 at the time). These structured yet informal monthly meetings routinely opened with a hot meal and “catching up,” which contributed to a culture of caring and respect for each other’s well-being, welcoming guests, and acknowledging individuals as members of the collective team. Following this, AT and JL described the research project “Exploring Ehealth Ethics & Multi-Morbidity” [
SK and AT acted as representatives for APAB and the research team respectively. The aims and format of eROAR2013 were agreed upon and clearly laid out in the early stages of planning, which required dialogue and precise understanding between all parties (i.e. APAB members and the research team). Mutual agreement on strategies of communication for the event was also required. APAB collaborators led the preparation and dissemination of promotional materials for the event, including the level of language used, format and key distribution channels. There was an ongoing negotiation via emails between SK and AT with final promotional materials approved by APAB members. The range of speakers and the event’s interactive format was also agreed upon (eg a balance was agreed on the level of interaction versus the number and range of speakers at the event) based on listening to each other’s perspectives. To reach these agreements, SK and AT communicated via regular emails and feedback to APAB members (during monthly meetings) and the research team (during bi-weekly in-person progress meetings) respectively. SK and AT also held separate in-person meetings a minimum of once a month and corresponded regularly by email and phone.
APAB members contributed organizational, leadership, communication and other skills and resources to the planning process, which were relied upon by the researchers. For example, a committee of five APAB members led by SK set key milestones and oversaw progress to achieving them. The committee independently secured the event venue, and requested EC (employed by APAB as a Research Liaison with funding allocated by Arthritis Research Canada) to arrange webcasting services for the event. One APAB member with an employment background in marketing endorsed a graphic illustrator (proposed by AT and JL) to do live visual note-taking of the session (see
Visual note-taking of the session
Another APAB member (who was also a physiotherapist) prepared stretch breaks, and another member (who was also a professional actor) worked with AT on the analysis of research data to present findings as a role-play [
Collaborators also held a teleconference to invite AM, a patient advocate/activist living with arthritis to moderate online conversations about the event, on account of her expertise in engaging with healthcare stakeholders using social media and her existing online network. Based in Toronto, AM advised on how to create an appropriate hashtag, generate interest on Twitter in advance of the event to maximize the number of online attendees on the day, and use social media analytics to assess the impact of the event. AM also prepared content to stimulate social media discussion about the event in advance and during the presentations. Thus, 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 were sincerely valued within the patient-researcher collaboration, which strengthened mutual respect for each other’s roles and priorities throughout the planning and preparation phase.
APAB members and researchers worked together during the event to stimulate interaction between local, national and international stakeholders via multiple methods of engagement. While both patient and researcher collaborators were on-hand to greet the 52 in-person audience members, EC moderated a live webcast that reached 117 total views (7% from outside Canada) and, as the online facilitator, AM stimulated a conversation on Twitter involving 42 participants (62% from outside Canada). APAB collaborators also supported CB whose role it was to include online participants in the in-person conversation. Of the six presentations, three were given by APAB members and a patient (who subsequently joined APAB) with expertise in social media, who shared their first-hand knowledge on Internet health resources, apps, devices and games, and online support groups (
Topics and speakers for eROAR2013
In turn, the patient priorities were emphasised as potential areas of future research. An ethicist, a clinician scientist, and a family physician also gave presentations and discussed research relevant to the theme of the event, positioned as experts alongside the patient expertise (
One challenge for patients and researchers was negotiating the patient-led aspect of eROAR2013 and the associated effort this meant (while acknowledging potential burdens for patients). Given the wide range of experience and skills of the APAB members, those less-experienced felt uncertainty about the tasks they undertook and sought guidance and support from other more experienced patient collaborators and researchers. A respectful approach taken by patient and researcher collaborators recognized this diversity within APAB members, in their specialist skills, knowledge and varying degrees of experiences, as well as different life situations and stages of illness, which impacted the nature and level of their engagement. In addition to balancing expectations of APAB members’ roles and responsibilities in the context of daily lives, it would be helpful for more experienced patient and researcher collaborators to provide more induction, mentorship and training to less experienced APAB members.
Challenges also emerged in the collaborative decision making process, for example in the event planning. In order to reach an agreed balance between academic terminology and every-day language to promote the event, the collaborators spent significant time in discussion, working together in a joint intellectual effort [
APAB collaborators reflected that they valued learning about the latest arthritis research during discussions, while researchers valued the training they received from APAB collaborators on how to better engage lay audiences with their research, the specialist skills and expertise they provided and the insights into their experience of collaborating in the context of their daily lives. This recognition and appreciation for mutual learning and respect built on the established research partnership, and made reflecting on the challenges more comfortable. In this way, trust and respect underpinned collaborative decision making that recognised differences in expertise, skills, experiences and priorities. By perceiving patient collaborators as experts in their own right, rather than experts in the researchers’ own image (whereby training may be needed for patients to conduct research), the more traditional hierarchy of knowledge was dampened. In its place was a mutual appreciation of the diverse skills that drove the collaboration, which in this instance was a patient led KT event that encapsulated the concept of “Nothing About Us Without Us” in principle and in practice.
The case study we report offers an opportunity to expand on the fledgling practice of patient engagement often reported in existing literature, such as that of INVOLVE and Hewlett [
It was a cooperative experience that can contribute to refining our thinking and enactment of patient engagement as it develops in the context of established patient-researcher partnerships [
Building successful, effective and meaningful patient engagement in research is a multi-layered, sometimes challenging, and valuable process that continues to evolve. In a knowledge translation event held in Vancouver, Canada, strong relationships built over time laid the foundation for a patient-led collaboration that revealed a different type of patient engagement than is typically reported. In describing the responsibilities and practical tasks undertaken, values and ethical considerations (eg, mutuality, understanding, respect and diversity) that underpin patient engagement in research are revealed as they are enacted relationally in a participatory space. It is our hope that this paper will help others to reflect on the changing nature of patient-researcher collaboration. We welcome feedback on our description and reflections on this case study.
The Arthritis Patient Advisory Board is funded by Arthritis Research Canada. The ‘E-health Ethics and Multi-Morbidity’ project is funded by a Canadian Institutes of Health Research (CIHR) catalyst grant competition (EPP-12297). We thank the speakers, the staff of The Blusson Spinal Cord Centre, technical support staff, Sam Bradd and all of the volunteers for their contributions to the eROAR2013 event.
The authors have declared that no competing interests exist.
Endnotes
a Formerly known as the Consumer Advisory Board, the Arthritis Patient Advisory Board chose to change its name in 2014 as it was felt the term “consumer” denoted an individual who purchased information or health care by choice. Members felt more comfortable identifying with the term “arthritis patient,” as it was considered to be more accurate while no longer seeming to indicate passivity as it had done when the original name was chosen.
b At the time of writing, APAB includes 23 members and 12 alumni. (29 women; 6 men).
c