Adapting patient and public involvement in patient-oriented methods research: Reflections in a Canadian setting during COVID-19.

BACKGROUND: Processes of the patient and public involvement (PPI) in health research shifted quickly during 2020. Faced with large-scale issues, such as the COVID-19 pandemic, the need to adapt processes of PPI to uphold commitments to nurturing the practice of 'nothing about us without us' in research has been urgent and profound. We describe how processes of PPI in research on patient-oriented methods of knowledge translation and implementation science were adapted by four teams in a Canadian setting. METHODS: As part of an ongoing quality improvement self-study to enhance PPI within these teams, team members shared their experiences of PPI in the context of this pivotal year during interviews and facilitated discussions. Drawing on these experiences, we outline challenges and reflections for adapting processes of PPI in health research on methods in times of urgency, conflict and fast-moving change. DISCUSSION: Our reflections offer insight into common issues encountered across teams that may be amplified during times of rapid change, including handling change and uncertainty, sustaining relationship-building and hearing differing perspectives in processes of PPI. CONCLUSION: These learnings present an opportunity to help others active in or planning patient-oriented methods research to reflect on the changing nature of PPI and how to adapt PPI processes in response to turbulent situations in the future.

Ethical issues experienced by persons with rheumatoid arthritis in a wearable-enabled physical activity intervention study.

INTRODUCTION: Using wearables to self-monitor physical activity is a promising approach to support arthritis self-management. Little is known, however, about the context in which ethical issues may be experienced when using a wearable in self-management. We used a relational ethics lens to better understand how persons with rheumatoid arthritis (RA) experience their use of a wearable as part of a physical activity counselling intervention study involving a physiotherapist (PT). METHODS: Constructivist grounded theory and a relational ethics lens guided the study design. This conceptual framework drew attention to benefits, downsides and tensions experienced in a context of relational settings (micro and macro) in which participants live. Fourteen initial and eleven follow-up interviews took place with persons with RA in British Columbia, Canada, following participation in a wearable-enabled intervention study. RESULTS: We created three main categories, exploring how experiences of benefits, downsides and tensions when using the intervention intertwined with shared moral values placed on self-control, trustworthiness, independence and productivity: (1) For some, using a wearable helped to 'do something right' by taking more control over reaching physical activity goals. Some, however, felt ambivalent, believing both there was nothing more they could do and that they had not done enough to reach their goal; (2) Some participants described how sharing wearable data supported and challenged mutual trustworthiness in their relationship with the PT; (3) For some, using a wearable affirmed or challenged their sense of self-respect as an independent and productive person. CONCLUSION: Participants in this study reported that using a wearable could support and challenge their arthritis self-management. Constructing moral identity, with qualities of self-control, trustworthiness, independence and productivity, within the relational settings in which participants live, was integral to ethical issues encountered. This study is a key step to advance understanding of ethical issues of using a wearable as an adjunct for engaging in physical activity from a patient's perspective. PATIENT OR PUBLIC CONTRIBUTION: Perspectives of persons with arthritis (mostly members of Arthritis Research Canada's Arthritis Patient Advisory Board) were sought to shape the research question and interpretations throughout data analysis.

Experiences of self-care during the COVID-19 pandemic among individuals with rheumatoid arthritis: A qualitative study.

OBJECTIVES: This study aimed to explore the impact of the coronavirus disease 2019 (COVID-19) pandemic on self-care of individuals living with rheumatoid arthritis (RA). METHODS: Guided by a constructivist, qualitative design, we conducted one-to-one in-depth telephone interviews between March and October 2020 with participants with RA purposively sampled for maximum variation in age, sex and education, who were participating in one of two ongoing randomized-controlled trials. An inductive, reflexive thematic analysis approach was used. RESULTS: Twenty-six participants (aged 27-73 years; 23 females) in British Columbia, Canada were interviewed. We identified three themes: (1) Adapting to maintain self-care describes how participants took measures to continue self-care activities while preventing virus transmissions. While spending more time at home, some participants reported improved self-care. (2) Managing emotions describes resilience-building strategies such as keeping perspective, positive reframing and avoiding negative thoughts. Participants described both letting go and maintaining a sense of control to accommodate difficulties and emotional responses. (3) Changing communication with health professionals outlined positive experiences of remote consultations with health professionals, particularly if good relationships had been established prepandemic. CONCLUSION: The insights gained may inform clinicians and researchers on ways to support the self-care strategies of individuals with RA and other chronic illnesses during and after the COVID-19 pandemic. The findings reveal opportunities to further examine remote consultations to optimize patient engagement and care. PATIENT OR PUBLIC CONTRIBUTION: This project is jointly designed and conducted with patient partners in British Columbia, Canada. Patient partners across the United Kingdom also played in a key role in providing interpretations of themes during data analysis.

Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects.

PURPOSE OF REVIEW: The term "patient engagement in research" refers to patients and their surrogates undertaking roles in the research process beyond those of study participants. This paper proposes a new framework for describing patient engagement in research, based on analysis of 30 publications related to patient engagement. RECENT FINDINGS: Over the past 15 years, patients' perspectives have been instrumental in broadening the scope of rheumatology research and outcome measurement, such as evaluating fatigue in rheumatoid arthritis. Recent reviews, however, highlight low-quality reporting of patient engagement in research. Until we have more detailed information about patient engagement in rheumatology research, our understanding of how patients' perspectives are being integrated into research projects remains limited. When authors follow our guidance on the important components for describing patients' roles and function as "research partners," researchers and other knowledge users will better understand how patients' perspectives were integrated in their research projects.

eHealth, Participatory Medicine, and Ethical Care: A Focus Group Study of Patients' and Health Care Providers' Use of Health-Related Internet Information.

BACKGROUND: The rapid explosion in online digital health resources is seen as transformational, accelerating the shift from traditionally passive patients to patients as partners and altering the patient-health care professional (HCP) relationship. Patients with chronic conditions are increasingly engaged, enabled, and empowered to be partners in their care and encouraged to take responsibility for managing their conditions with HCP support. OBJECTIVE: In this paper, we focus on patients' and HCPs' use of health-related Internet information and how it influences the patient-HCP relationship. In particular, we examine the challenges emerging in medical encounters as roles and relationships shift and apply a conceptual framework of relational ethics to examine explicit and nuanced ethical dimensions emerging in patient-HCP interactions as both parties make increased use of health-related Internet information. METHODS: We purposively sampled patients and HCPs in British Columbia, Canada, to participate in focus groups. To be eligible, patients self-reported a diagnosis of arthritis and at least one other chronic health condition; HCPs reported a caseload with >25% of patients with arthritis and multimorbidity. We used a semistructured, but flexible, discussion guide. All discussions were audiotaped and transcribed verbatim. Elements of grounded theory guided our constant comparison thematic analytic approach. Analysis was iterative. A relational ethics conceptual lens was applied to the data. RESULTS: We recruited 32 participants (18 patients, 14 HCPs). They attended seven focus groups: four with patients and three with rehabilitation professionals and physicians. Predominant themes to emerge were how use of health-related Internet information fostered (1) changing roles, (2) patient-HCP partnerships, and (3) tensions and burdens for patients and HCPs. CONCLUSIONS: Relational aspects such as mutual trust, uncertainty, and vulnerability are illuminated in patient-HCP interactions around health-related Internet information and the negotiated space of clinical encounters. New roles and associated responsibilities have key ethical dimensions that make clear the changes are fundamental and important to understand in ethical care. When faced with tensions and burdens around incorporating health-related Internet information as a resource in clinical encounters, participants described a particular ambivalence illustrating the fundamental changes being negotiated by both patients and HCPs.

A patienthood that transcends the patient: An analysis of patient research partners' narratives of involvement in a Canadian arthritis patient advisory board.

OBJECTIVES: Incorporating the perspectives of patients and public into the conduct of research has the potential to make scientific research more democratic. This paper explores how being a patient partner on an arthritis patient advisory board shapes the patienthood of a person living with arthritis. METHODS: An analysis was undertaken of the narratives of 22 patient research partners interviewed about their experiences on the Arthritis Patient Advisory Board (APAB), based in Vancouver, Canada. RESULTS: Participants' motivations to become involved in APAB stemmed largely from their desire to change their relationship with their condition. APAB was a living collective project in which participants invested their hope, both for their own lives as patients and for others with the disease. CONCLUSIONS: Our findings highlight how the journeys of patient partners connect and integrate seemingly disparate conceptions of what it means to be a patient. One's experience as a clinical 'patient' transforms into the broader notion of civic patienthood.

The Impact of Occupational Therapy on the Self-Management of Rheumatoid Arthritis: A Mixed Methods Systematic Review.

OBJECTIVE: To determine the impact of occupational therapy (OT) on the self-management of function, pain, fatigue, and lived experience for people living with rheumatoid arthritis (RA). METHODS: Five databases and gray literature were searched up to June 30, 2022. Three reviewers screened titles and abstracts, with two independently extracting and assessing full texts using the Cochrane risk of bias (quantitative) and Critical Appraisal Skills Programme (qualitative) tools to assess study quality. Studies were categorized into four intervention types. Grading of Recommendations, Assessment, Development and Evaluations (GRADE) (quantitative) and GRADE- Confidence in Evidence from Reviews of Qualitative research (qualitative) were used to assess the quality of evidence for each intervention type. RESULTS: Of 39 eligible papers, 29 were quantitative (n = 2,029), 4 qualitative (n = 50), and 6 mixed methods (n = 896). Good evidence supports patient education and behavior change programs for improving pain and function, particularly group sessions of joint protection education, but these do not translate to long-term improvements for RA (>24 months). Comprehensive OT had mixed evidence (limited to home OT and an arthritis gloves program), whereas limited evidence was available for qualitative insights, splints and assistive devices, and self-management for fatigue. CONCLUSION: Although patient education is promising for self-managing RA, no strong evidence was found to support OT programs for self-managing fatigue or patient experience and long-term effectiveness. More research is required on lived experience, and the long-term efficacy of self-management approaches incorporating OT, particularly timing programs to meet the individual's conditional needs (i.e., early or established RA) to build on the few studies to date.

Decision-Making Around COVID-19 Public Health Measures and Implications for Self-Care Activities: Experiences of Persons With Rheumatoid Arthritis.

OBJECTIVE: We aimed to advance understanding of how persons with rheumatoid arthritis (RA) experience decision-making about adopting public health measures during the COVID-19 pandemic. METHODS: Persons living with RA partnered throughout this nested qualitative study. One-to-one semistructured telephone interviews were conducted with participants with RA between December 2020 and December 2021. They were strategically sampled from a randomized controlled trial that was underway to test a physical activity counseling intervention. Analysis was guided by reflexive thematic analysis. RESULTS: Thirty-nine participants (aged 26-86 years; 36 women) in British Columbia, Canada were interviewed. We developed three themes. Participants described how their decision-making about public health measures related to 1) "upholding moral values of togetherness" because decisions were intertwined with moral values of neighborliness and reciprocity. Some adapted their self-care routines to uphold these moral values; 2) "relational autonomy-supports and challenges," because they sometimes felt supported and undermined in different relational settings (eg, by family, local community, or provincial government); and 3) "differing trust in information sources," in which decisions were shaped by the degree of faith they had in various information sources, including their rheumatologists. CONCLUSION: Across themes, experiences of decision-making about public health measures during the pandemic were embedded with moral concepts of solidarity, autonomy, and trust, with implications for how persons with RA chose and sustained their self-care activities. Insights gained help sensitize researchers and clinicians to moral issues experienced by persons with RA, which may inform support for self-care activities during and after the pandemic.

Exploring the experience of cognitive changes among community-dwelling stroke survivors: a qualitative study.

PURPOSE: Cognitive deficits are common among stroke survivors and impact their functional independence. Despite the prevalence of cognitive deficits after stroke, cognitive function is largely overlooked in post-stroke care. The aim of this qualitative study was to explore the experiences of individuals living with post-stroke cognitive changes to understand the impact of these changes on their daily lives. MATERIALS AND METHODS: Semi-structured interviews were conducted with a purposeful sample of thirteen community-dwelling adults 50 years and older with chronic stroke who self-identified cognitive changes post-stroke. Interviews were transcribed and an inductive thematic analysis was completed. RESULTS: Four key themes were identified: 1) inability to maintain everyday activities; 2) experiencing emotional responses to living with post-stroke cognitive changes; 3) a shrinking social world and; 4) seeking care for cognitive health post-stroke. CONCLUSIONS: Post-stroke cognitive changes were described by participants as a driving force behind negative shifts in their daily lives, emotional health, and social connections after stroke. Despite seeking care for their post-stroke cognitive changes, many participants were unable to find support in mainstream healthcare. There is a demonstrated need to further elucidate the gaps in care for post-stroke cognitive deficits and implement community interventions targeting cognitive health post-stroke.IMPLICATIONS FOR REHABILITATIONClinicians should consider how cognitive changes post-stroke may affect daily life and the uptake in support services to help improve accessibility and alter the delivery of care accordingly.Clinicians should regularly complete cognitive screenings among their clients living with stroke and probe them for the effects of cognitive deficits within their daily life.There is a demonstrated need for community interventions that target cognitive health for individuals living with stroke, and clinicians should consider advocating for and spearheading such programs within the community.

The role of occupational therapy for the self-management of rheumatoid arthritis: A protocol for a mixed methods systematic review.

BACKGROUND: Occupational therapists can support people with rheumatoid arthritis to self-manage their disease symptoms and engage in daily activities. This protocol reports a review to broaden understanding of what is known about the role of occupational therapy in the self-management of rheumatoid arthritis. METHODS: Studies involving adults with rheumatoid arthritis, having participated in self-management involving occupational therapy, will be included. Patient involvement will help develop the search strategy by identifying patient-centred interventions and outcomes to complement those identified by researchers. An electronic search will be performed using several bibliographic databases, including grey literature from subject-specific, health-related, and social care databases. Searches will run from the database inception until the date that the search is conducted (December 2021-May 2022). Retrieved studies will be de-duplicated, and the remaining titles and abstracts will be screened by three reviewers. Full texts of all eligible studies will be independently reviewed by the reviewers to select papers for data extraction and quality assessment. Outcomes are function, pain, fatigue and lived experience. For quantitative studies, data will be synthesised using descriptive statistics in text and tables, whereas for qualitative studies, data will be synthesised using thematic synthesis. DISCUSSION: This review will synthesise current evidence on how occupational therapy can help the self-management of rheumatoid arthritis. It will include evidence of best practice, including advice, education and training provided by occupational therapists. These findings can inform future research and the selection of strategies to promote quality of life for people with rheumatoid arthritis. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42022302205.

Researcher-patient partnership generated actionable recommendations, using quantitative evaluation and deliberative dialogue, to improve meaningful engagement.

OBJECTIVES: To demonstrate how the 22-item Patient Engagement in Research Scale (PEIRS-22) can be used to develop recommendations for improving the meaningfulness of patient engagement. STUDY DESIGN AND SETTING: PEIRS-22 previously captured quantitative evaluation data from 15 patient partners in a self-study of the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance. Guided by deliberative dialogue, the current study involved 3 steps: (1) In-depth analysis and interpretation of the PEIRS-22 data produced a lay evidence summary with identified areas for improvement of meaningful engagement; (2) A 3-hour virtual workshop with patient partners and researchers generated initial recommendations; and (3) In two successive post-workshop surveys, ratings by workshop invitees led to consensus on the recommendations. RESULTS: Twenty-five participants attended the workshops and dialogued on 8 areas for improvement identified from the PEIRS-22 data. Twenty-eight unique initial recommendations led to consensus on 14 key recommendations organized across 4 categories: setting expectations for all team members, building trust and ongoing communication, providing opportunities to enhance learning and to develop skills, and acknowledging contributions of patient partners. CONCLUSION: Using PEIRS-22 data within a deliberate dialogue elucidated 14 actionable recommendations to support ongoing improvement of patient engagement at SPOR Evidence Alliance, a pan-Canadian health research initiative.

Essential content for teaching implementation practice in healthcare: a mixed-methods study of teams offering capacity-building initiatives.

BACKGROUND: Applying the knowledge gained through implementation science can support the uptake of research evidence into practice; however, those doing and supporting implementation (implementation practitioners) may face barriers to applying implementation science in their work. One strategy to enhance individuals' and teams' ability to apply implementation science in practice is through training and professional development opportunities (capacity-building initiatives). Although there is an increasing demand for and offerings of implementation practice capacity-building initiatives, there is no universal agreement on what content should be included. In this study we aimed to explore what capacity-building developers and deliverers identify as essential training content for teaching implementation practice. METHODS: We conducted a convergent mixed-methods study with participants who had developed and/or delivered a capacity-building initiative focused on teaching implementation practice. Participants completed an online questionnaire to provide details on their capacity-building initiatives; took part in an interview or focus group to explore their questionnaire responses in depth; and offered course materials for review. We analyzed a subset of data that focused on the capacity-building initiatives' content and curriculum. We used descriptive statistics for quantitative data and conventional content analysis for qualitative data, with the data sets merged during the analytic phase. We presented frequency counts for each category to highlight commonalities and differences across capacity-building initiatives. RESULTS: Thirty-three individuals representing 20 capacity-building initiatives participated. Study participants identified several core content areas included in their capacity-building initiatives: (1) taking a process approach to implementation; (2) identifying and applying implementation theories, models, frameworks, and approaches; (3) learning implementation steps and skills; (4) developing relational skills. In addition, study participants described offering applied and pragmatic content (e.g., tools and resources), and tailoring and evolving the capacity-building initiative content to address emerging trends in implementation science. Study participants highlighted some challenges learners face when acquiring and applying implementation practice knowledge and skills. CONCLUSIONS: This study synthesized what experienced capacity-building initiative developers and deliverers identify as essential content for teaching implementation practice. These findings can inform the development, refinement, and delivery of capacity-building initiatives, as well as future research directions, to enhance the translation of implementation science into practice.

What is the value and impact of the adaptation process on quality indicators for local use? A scoping review.

BACKGROUND: Quality indicators (QIs) are designed for improving quality of care, but the development of QIs is resource intensive and time consuming. OBJECTIVE: To describe and identify the impact and potential attributes of the adaptation process for the local use of existing QIs. DATA SOURCES: EMBASE, MEDLINE, CINAHL and grey literature were searched. STUDY SELECTION: Literatures operationalizing or implementing QIs that were developed in a different jurisdiction from the place where the QIs were included. RESULTS: Of 7704 citations identified, 10 out of 33 articles were included. Our results revealed a lack of definition and conceptualization for an adaptation process in which an existing set of QIs was applied. Four out of ten studies involved a consensus process (e.g., Delphi or RAND process) to determine the suitability of QIs for local use. QIs for chronic conditions in primary and secondary settings were mostly used for adaptation. Of the ones that underwent a consensus process, 56.3 to 85.7% of original QIs were considered valid for local use, and 2 to 21.8% of proposed QIs were newly added. Four attributes should be considered in the adaptation: 1) identifying areas/conditions; 2) a consensus process; 3) proposing adapted QIs; 4) operationalization and evaluation. CONCLUSION: The existing QIs, although serving as a good starting point, were not adequately adapted before for use in a different jurisdiction from their origin. Adaptation of QIs under a systematic approach is critical for informing future research planning for QIs adaptation and potentially establishing a new pathway for healthcare improvement.

Perspectives of Persons With Arthritis on the Use of Wearable Technology to Self Monitor Physical Activity: A Qualitative Evidence Synthesis.

OBJECTIVE: We aimed to broaden understanding of the perspectives of persons with arthritis on their use of wearables to self-monitor physical activity, through a synthesis of evidence from qualitative studies. METHODS: We conducted a systematic search of 5 databases (including Medline, CINAHL, and Embase) from inception to 2018. Eligible studies qualitatively examined the use of wearables from the perspectives of persons with arthritis. All relevant data were extracted and coded inductively in a thematic synthesis. RESULTS: Of 4,358 records retrieved, 7 articles were included. Participants used a wearable during research participation in 3 studies and as part of usual self-management in 2 studies. In remaining studies, participants were shown a prototype they did not use. Themes identified were: 1) the potential to change dynamics in patient-health professional communication: articles reported a common opinion that sharing wearable data could possibly enable patients to improve communication with health professionals; 2) wearable-enabled self-awareness, whether a benefit or downside: there was agreement that wearables could increase self-awareness of physical activity levels, but perspectives were mixed on whether this increased self-awareness motivated more physical activity; 3) designing a wearable for everyday life: participants generally felt that the technology was not obtrusive in their everyday lives, but certain prototypes may possibly embarrass or stigmatize persons with arthritis. CONCLUSION: Themes hint toward an ethical dimension, as participants perceive that their use of wearables may positively or negatively influence their capacity to shape their everyday self-management. We suggest ethical questions pertinent to the use of wearables in arthritis self-management for further exploration.

Engaging with patients in research on knowledge translation/implementation science methods: a self study.

BACKGROUND: In 2017, the British Columbia (Canada) SUPPORT (SUpport for People and Patient-Oriented Research) Unit created six methods clusters to advance methodologies in patient and public oriented research (POR). The knowledge translation (KT)/implementation science methods cluster identified that although there was guidance about how to involve patients and public members in POR research generally, little was known about how best to involve patients and public members on teams specifically exploring POR KT/implementation science methodologies. The purpose of this self-study was to explore what it means to engage patients and the public in studies of POR methods through the reflections of members of five KT/implementation science teams. METHODS: Informed by a collaborative action research approach, this quality improvement self-study focused on reflection within four KT/implementation science research teams in 2020-2021. The self-study included two rounds of individual interviews with 18 members across four teams. Qualitative data were analyzed using a thematic analysis approach followed by a structured discussion of preliminary findings with the research teams. Subsequently, through two small group discussion sessions, the patients/public members from the teams refined the findings. RESULTS: Undertaking research on POR KT/implementation science methodologies typically requires teams to work with the uncertainty of exploratory and processual research approaches, make good matches between patients/public members and the team, work intentionally yet flexibly, and be attuned to the external context and its influences on the team. POR methodological research teams need to consider that patients/public members bring their life experiences and world views to the research project. They become researchers in their own right. Individual and team reflection allows teams to become aware of team needs, acknowledge team members' vulnerabilities, gain greater sensitivity, and enhance communication. CONCLUSIONS: The iterative self-study process provided research team members with opportunities for reflection and new understanding. Working with patients/public team members as co-researchers opens up new ways of understanding important aspects of research methodologies, which may influence future KT/implementation science research approaches.

In this self-study we aimed to understand how members of research teams work together. We explored how research teams included patients and public members in studying research approaches (methods) that support the creation, sharing, and use of research results that matter to patients and the public (patient and public-oriented research). We analyzed interviews with 18 members of 4 teams and discussed the findings with each team. We then further refined the results and their interpretation with patients/public team members. We found that research teams had to deal with the uncertainty that is common for this type of research, which is often exploratory and focuses on processes. There needed to be a good match between patient/public members, the topic, and the team. Teams had to be flexible in how they worked together and they needed to address how power was shared within the team. Finally, the teams were affected by world events such as COVID and social unrest. Research team members had a chance to reflect and gain new understandings through the self-study. A key learning was that patients and public members bring their life experiences and world views to the project. They become researchers in their own right. When team members have a chance to reflect they can become more aware of their own and others' talents, needs, and vulnerabilities, that awareness can help improve communication and teamwork. Patients and public members as co-researchers can bring new ways of understanding important features of knowledge translation and implementation science research approaches.

Experiences of Wearable Technology by Persons with Knee Osteoarthritis Participating in a Physical Activity Counseling Intervention: Qualitative Study Using a Relational Ethics Lens.

BACKGROUND: Current evidence indicates physical activity wearables could support persons with knee osteoarthritis (OA) to be more physically active. However, recent evidence also identifies some persons with arthritis experience guilt or worry while using a wearable if they are not as active as they feel they should be. Questions remain around how persons with knee OA experience benefits or downsides using a wearable in their everyday lives. Better understanding is needed if wearables are to be incorporated in arthritis self-management in ethically aware ways. OBJECTIVE: Using an ethics lens, we aimed to describe a range of experiences from persons with knee OA who used a wearable during a physical activity counseling intervention study. METHODS: This is a secondary analysis of qualitative interviews nested within a randomized controlled trial. Guided by phenomenography, we explored the experiences of persons with knee OA following participation in a physical activity counseling intervention that involved using a Fitbit Flex and biweekly phone calls with a study physiotherapist (PT) in an 8-week period. Benefits or downsides experienced in participants' relationships with themselves or the study PT when using the wearable were identified using a relational ethics lens. RESULTS: Interviews with 21 participants (12 females and 9 males) aged 40 to 82 years were analyzed. Education levels ranged from high school graduates (4/21, 19%) to bachelor's degrees or above (11/21, 52%). We identified 3 categories of description: (1) participants experienced their wearable as a motivating or nagging influence to be more active, depending on how freely they were able to make autonomous choices about physical activity in their everyday lives; (2) some participants felt a sense of accomplishment from seeing progress in their wearable data, which fueled their motivation; (3) for some participants, sharing wearable data helped to build mutual trust in their relationship with the study PT. However, they also expressed there was potential for sharing wearable data to undermine this trust, particularly if this data was inaccurate. CONCLUSIONS: Findings provide an early glimpse into positive and negative emotional impacts of using a wearable that can be experienced by participants with knee OA when participating in a randomized controlled trial to support physical activity. To our knowledge, this is the first qualitative study that uses a relational ethics lens to explore how persons with arthritis experienced changes in their relationship with a health professional when using a wearable during research participation.

Tailored physical activity behavior change interventions: challenges and opportunities.

A physically active lifestyle provides innumerable benefits; yet, few individuals are physically active enough to reap those benefits. Tailored physical activity interventions may address low rates of physical activity by offering individualized strategies that consider a person's characteristics, needs, preferences, and/or context, rather than the traditional one-size-fits-all approach. However, the tailoring methodology is in its nascency, and an understanding of how best to develop such interventions is needed. In this commentary, we identify future directions to enhance the impact of tailored interventions designed to increase physical activity participation. A multi-country collaborative was established to review the literature and discuss an agenda for future research. Two overarching research opportunities are suggested for improving the development of tailored, behavioral physical activity interventions: (a) optimize the engagement of diverse knowledge users in intervention co-design and (b) examine ethical considerations that may impact the use of technology to support tailored physical activity delivery. Specifically, there is a need for better reporting and evaluation of knowledge user involvement alongside targeting diversity in the inclusion of knowledge users. Furthermore, while technology boasts many opportunities to increase the scale and precision of interventions, examinations of how it impacts recipients' experiences of and participation in tailored interventions are needed to ensure the benefits of technology use outweigh the risks. A better understanding of these research areas will help ensure that the diverse needs of individuals are met, technology is appropriately used to support tailoring, and ultimately it improves the effectiveness of tailored physical activity interventions.

Being physically active has many social, emotional, and health benefits, but very few individuals are active enough to see those benefits. Using interventions that are tailored, in other words, individualized to a person's characteristics, needs, preferences, and/or situation, may help improve physical activity participation rates. However, a better understanding of how to do tailoring is needed. Our collaboration reviewed the literature and convened to suggest two key opportunities to better understand how tailored approaches to physical activity can be done: (a) improve engagement of those who the research is intended for and (b) understand the ethical impacts and patient/provider experience of using technology to support tailoring.

Using Physical Activity Trackers in Arthritis Self-Management: A Qualitative Study of Patient and Rehabilitation Professional Perspectives.

OBJECTIVE: To compare and contrast the perspectives of patients with arthritis and those of rehabilitation professionals regarding starting and sustaining use of physical activity trackers (PATs). METHODS: We conducted focus group sessions with patients, physiotherapists, and occupational therapists in Ontario, Alberta, or British Columbia, Canada. To be eligible, patients must have self-reported a diagnosis of inflammatory or osteoarthritis. Rehabilitation professionals reported that at least 40% of their caseload was dedicated to arthritis care. Participants had any level of experience with PATs. A thematic analytic approach was used. RESULTS: The following 3 themes were identified: 1) anticipating sharing objective measures of physical activity. Participants agreed that use of PATs had the potential to improve consultations between patients with arthritis and rehabilitation professionals but were uncertain how to achieve this potential; 2) perceived or experienced barriers to start or continue using a PAT. Participants shared doubts about whether existing PATs would meet specific needs of patients with arthritis and expressed concerns about possible negative impacts; and 3) bolstering motivation? Although there was agreement that use of PATs could bolster the motivation of patients who were already active, patients and rehabilitation professionals had different opinions regarding whether use of PATs alone would motivate patients to start increasing activity levels. CONCLUSION: Our study highlights similarities and differences between the perspectives of patients and rehabilitation professionals regarding the potential value and risks of integrating PATs into arthritis self-management. Despite agreement about the potential of PATs, participants were uncertain how to effectively incorporate these tools to enhance patient-clinician consultations and had differing views about whether use of PATs would support a patient's motivation to be active.

Patient Perspectives on the Challenges and Responsibilities of Living With Chronic Inflammatory Diseases: Qualitative Study.

BACKGROUND: Collectively, chronic inflammatory diseases take a great toll on individuals and society in terms of participation restrictions, quality of life, and economic costs. Although prior qualitative studies have reported patients' experiences and challenges living with specific diseases, few have compared the consequences of disease management in daily life across different types of inflammatory diseases in studies led by patient partners. OBJECTIVE: The aim of this study was to identify the significant consequences of inflammatory arthritis, psoriasis, and inflammatory bowel diseases on daily life and explore commonalities across diseases. METHODS: A cross-sectional Web-based survey was designed by patient research partners and distributed by patient awareness organizations via their social media channels and by sharing a link in a newspaper story. One open-ended item asked about burdens and responsibilities experienced in daily life. Informed by narrative traditions in qualitative health research, we applied a thematic content analysis to participants' written accounts in response to this item. This is an example of a study conceived, conducted, and interpreted with patients as research partners. RESULTS: A total of 636 Canadians, with a median age band of 55-64 years, submitted surveys, and 80% of the respondents were women. Moreover, 540 participants provided written substantive responses to the open-ended item. Overall, 4 main narratives were generated: (1) daily life disrupted; (2) socioeconomic vulnerabilities; (3) stresses around visible, invisible, and hiding disabilities; and (4) actions aimed at staying positive. Ways in which participants experienced social stigma, pain and fatigue, balancing responsibilities, and worries about the future appeared throughout all 4 narratives. CONCLUSIONS: People living with chronic inflammatory diseases affecting joints, skin, and the digestive tract report important gaps between health, social, and economic support systems that create barriers to finding the services they need to sustain their health. Regardless of diagnosis, they report similar experiences navigating the consequences of lifelong conditions, which have implications for policy makers. There is a need for outcome measures in research and service delivery to address patient priorities and for programs to fill gaps created by the artificial administrative separation of health services, social services, and income assistance.

'Adding another spinning plate to an already busy life'. Benefits and risks in patient partner-researcher relationships: a qualitative study of patient partners' experiences in a Canadian health research setting.

OBJECTIVE: To better understand, based on patient partners' experiences, benefits and risks in patient partner-researcher relationships in a health research setting. DESIGN: Qualitative interviews with thematic analysis informed by a relational ethics lens. SETTING: A multidisciplinary health research centre in Vancouver, Canada. This study was codeveloped by patient partners and researchers at the centre. PARTICIPANTS: 22 people living with arthritis, with experience as members of a patient advisory board at the research centre from 1 month to 10 years. RESULTS: We identified three main themes: (1) Being Heard: Participants had experienced uncomfortable emotions (eg, feelings of insecurity) in their relationships with researchers. The discomfort, however, was minimised by the demonstration of mutual respect in their interactions. Specifically, participants valued environments without a hierarchy between patient partners and researchers, where contributions of each party were considered equally important, and where patients' voices were heard; (2) Cobuilding social relations: Participants valued building social relations with researchers beyond their expected interactions as partners in research and (3) Adding another spinning plate to an already busy life: Participants valued relationships with researchers who had cocreated environments that minimised the risks of physical and emotional impacts (eg, fatigue, stress, guilt) on them while juggling multiple obligations, priorities and their health. CONCLUSIONS: Findings provide valuable insights to guide relationship building between patient partners and researchers. Informed by a relational ethics lens, these findings are a critical step in supporting an ethically sound practice of patient engagement in research that prioritises patients' perspectives.