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.

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.

Effects of a 12-Week Multifaceted Wearable-Based Program for People With Knee Osteoarthritis: Randomized Controlled Trial.

BACKGROUND: Current guidelines emphasize an active lifestyle in the management of knee osteoarthritis (OA), but up to 90% of patients with OA are inactive. In a previous study, we demonstrated that an 8-week physiotherapist (PT)-led counseling intervention, with the use of a Fitbit, improved step count and quality of life in patients with knee OA, compared with a control. OBJECTIVE: This study aimed to examine the effect of a 12-week, multifaceted wearable-based program on physical activity and patient outcomes in patients with knee OA. METHODS: This was a randomized controlled trial with a delay-control design. The immediate group (IG) received group education, a Fitbit, access to FitViz (a Fitbit-compatible app), and 4 biweekly phone calls from a PT over 8 weeks. Participants then continued using Fitbit and FitViz independently up to week 12. The delay group (DG) received a monthly electronic newsletter in weeks 1 to 12 and started the same intervention in week 14. Participants were assessed in weeks 13, 26, and 39. The primary outcome was time spent in daily moderate-to-vigorous physical activity (MVPA; in bouts ≥10 min) measured with a SenseWear Mini. Secondary outcomes included daily steps, time spent in purposeful activity and sedentary behavior, Knee Injury and OA Outcome Score, Patient Health Questionnaire-9, Partners in Health Scale, Theory of Planned Behavior Questionnaire, and Self-Reported Habit Index. RESULTS: We enrolled 51 participants (IG: n=26 and DG: n=25). Compared with the IG, the DG accumulated significantly more MVPA time at baseline. The adjusted mean difference in MVPA was 13.1 min per day (95% CI 1.6 to 24.5). A significant effect was also found in the adjusted mean difference in perceived sitting habit at work (0.7; 95% CI 0.2 to 1.2) and during leisure activities (0.7; 95% CI 0.2 to 1.2). No significant effect was found in the remaining secondary outcomes. CONCLUSIONS: A 12-week multifaceted program with the use of a wearable device, an app, and PT counseling improved physical activity in people with knee OA. TRIAL REGISTRATION: ClinicalTrials.gov NCT02585323; https://clinicaltrials.gov/ct2/show/NCT02585323.

Efficacy of a Physical Activity Counseling Program With Use of a Wearable Tracker in People With Inflammatory Arthritis: A Randomized Controlled Trial.

OBJECTIVE: To assess the efficacy of a multifaceted counseling intervention at improving physical activity participation and patient outcomes. METHODS: We recruited people with rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE). In weeks 1-8, the immediate group received education and counseling by a physical therapist, used a Fitbit and a web application to obtain feedback about their physical activity, and received 4 follow-up calls from the physical therapist. The delay group received the same intervention in weeks 10-17. Participants were assessed at baseline and at weeks 9, 18, and 27. The primary outcome was time spent in moderate/vigorous physical activity (MVPA; in bouts of ≥10 minutes) measured with a SenseWear device. Secondary outcomes included step count, time in sedentary behavior, pain, fatigue, mood, self-management capacity, and habitual behaviors. RESULTS: A total of 118 participants enrolled. The adjusted mean difference in MVPA was 9.4 minutes/day (95% confidence interval [95% CI] -0.5, 19.3, P = 0.06). A significant effect was found in pain (-2.45 [95% CI -4.78, -0.13], P = 0.04), and perceived walking habit (0.54 [95% CI 0.08, 0.99], P = 0.02). The remaining secondary outcomes improved, but were not statistically significant. Post hoc analysis revealed a significant effect in MVPA (14.3 minutes/day [95% CI 2.3, 26.3]) and pain (-4.05 [95% CI -6.73, -1.36]) in participants with RA, but not in those with SLE. CONCLUSION: Counseling by a physical therapist has the potential to improve physical activity in people with inflammatory arthritis, but further study is needed to understand the intervention effect on different diseases. We found a significant improvement in pain, suggesting that the intervention might have a positive effect on symptom management.

"I just love it": Avid knitters describe health and well-being through occupation.

BACKGROUND.: Examining craft-based occupations is necessary to explicate the relationship between occupation and well-being. PURPOSE.: This study aimed to understand the role of knitting in the lives of passionate knitters and their experience of how knitting contributes to health, well-being, and occupational identity. METHOD.: Principles of phenomenology guided interviews with 21 knitting-guild members (with and without health conditions) and observations at seven guild meetings as well as guided the data analysis. Eight interviewees and 24 additional guild members confirmed key findings in writing. FINDINGS.: Five main themes capture how knitting (a) "makes me happy," (b) is "the mental challenge I need," (c) is "a hobby that joins" through social connections and skill development, (d) sustains identity such that "I can't imagine life without knitting," and (e) is a creative outlet "reflecting my personality." IMPLICATIONS.: This in-depth description of how knitters experience their craft in daily life bolsters the philosophical assumption that favoured occupations have the power to promote health and well-being.

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.

Exploring strategies to support medication adherence in patients with inflammatory arthritis: a patient-oriented qualitative study using an interactive focus group activity.

OBJECTIVE: Medication non-adherence is a substantial problem among patients with inflammatory arthritis (IA). Our aim was to explore IA patients' perspectives on strategies to support medication adherence. METHODS: We collaborated with a leading arthritis patient group and conducted a qualitative study on individuals with IA who were taking at least one medication for their IA. An experienced facilitator led participants through a focus group exercise where participants were asked to design, and then discuss, strategies and/or tools supporting medication use. We applied thematic analysis using an iterative, constant comparative approach. RESULTS: We studied six focus groups with 27 participants diagnosed with rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis and comparatively under-represented conditions in this research area such as Sjögren's syndrome. Five themes emerged throughout the analysis. Two themes - 1) adapting to life with IA and 2) the complexities and dynamic nature of taking medications - describe learning to live with a chronic condition and the challenges encountered when using long-term medications. Three themes - 3) developing lifestyle strategies for medication use (eg, having physical reminders and prompts), 4) becoming informed about medications (eg, information at time of diagnosis, means of receiving information) and 5) receiving support (eg, from health care team members, from family) - offer perspectives on facilitators to medication use. From the relationship between the latter themes, a framework was developed that encompasses means of receiving information and support as actionable targets for patient-oriented adherence interventions for IA. CONCLUSION: This patient-oriented study highlights the importance of developing timely adherence interventions for IA. Our findings also led to a framework describing means of receiving information, such as through digital media and support, including from health care team members and family, as actionable targets for patient-oriented adherence interventions for IA.

'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.

Key barriers to gout care: a systematic review and thematic synthesis of qualitative studies.

OBJECTIVES: Gout care remains highly suboptimal, contributing to an increased global disease burden. To understand barriers to gout care, our aim was to provide a systematic review and thematic synthesis of qualitative studies worldwide reporting provider and patient perspectives and experiences with management. METHODS: We conducted a mapped search of MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, and Social Sciences Citation Index databases and selected qualitative studies of provider and patient perspectives on gout management. We used thematic synthesis to combine the included studies and identify key themes across studies. RESULTS: We included 20 studies that reported the experiences and perspectives of 480 gout patients and 120 providers spanning five different countries across three continents. We identified three predominant provider themes: knowledge gaps and management approaches; perceptions and beliefs about gout patients; and system barriers to optimal gout care (e.g. time constraints and a lack of incentives). We also identified four predominant themes among gout patients: limited gout knowledge; interactions with health-care providers; attitudes towards and experiences with taking medication; and practical barriers to long-term medication use. CONCLUSION: Our systematic review of worldwide literature consistently identified gaps in gout knowledge among providers, which is likely to contribute to patients' lack of appropriate education about the fundamental causes of and essential treatment approaches for gout. Furthermore, system barriers among providers and day-to-day challenges of taking long-term medications among patients are considerable. These factors provide key targets to improve the widespread suboptimal gout care.

eHealth Technologies, Multimorbidity, and the Office Visit: Qualitative Interview Study on the Perspectives of Physicians and Nurses.

BACKGROUND: eHealth is a broad term referring to the application of information and communication technologies in the health sector, ranging from health records to telemedicine and multiple forms of health education and digital tools. By providing increased and anytime access to information, opportunities to exchange experiences with others, and self-management support, eHealth has been heralded as transformational. It has created a group of informed, engaged, and empowered patients as partners, equipped to take part in shared decision making and effectively self-manage chronic illness. Less attention has been given to health care professionals' (HCPs) experiences of the role of eHealth in patient encounters. OBJECTIVE: The objective of this study was to examine HCPs' perspectives on how eHealth affects their relationships with patients living with multiple chronic conditions, as well as its ethical and practical ramifications. METHODS: We interviewed HCPs about their experiences with eHealth and its impact on the office visit. Eligible participants needed to report a caseload of ≥25% of patients with multimorbidity to address issues of managing complex chronic conditions and coordination of care. We used a semistructured discussion guide for in-depth interviews, and follow-up interviews served to clarify and expand upon initial discussions. Constant comparisons and a narrative approach guided the analyses, and a relational ethics conceptual lens was applied to the data to identify emergent themes. RESULTS: A total of 12 physicians and nurses (6 male, 6 female; median years of practice=13) participated. eHealth tools most frequently described were Web-based educational resources for patients and Web-based resources for HCPs such as curated scientific summaries on diagnostic criteria, clinical therapies, and dosage calculators. Analysis centered on a grand theme of the two-way conversation between HCPs and patients, which addresses a general recentering of the ethical relationship between HCPs and patients around engagement. Subthemes explain the evolution of the two-way conversation, and having, using, and supporting the two-way conversation with patients, primarily as this relates to achieving adherence and health outcomes. CONCLUSIONS: Emerging ethical concerns were related to the ambiguity of the ideal of empowered patients and the ways in which health professionals described enacting those ideals in practice, showing how the cultural shift toward truly mutually respectful and collaborative practice is in transition. HCPs aim to act in the best interests of their patients; the challenge is to benefit from emergent technologies that may enhance patient-HCP interactions and effective care, while abiding by regulations, dealing with the strictures of the technology itself, and managing changing demands on their time.

A technology-enabled Counselling program versus a delayed treatment control to support physical activity participation in people with inflammatory arthritis: study protocol for the OPAM-IA randomized controlled trial.

BACKGROUND: Being physically active is an essential component of successful self-management for people with inflammatory arthritis; however, the vast majority of patients are inactive. This study aims to determine whether a technology-enabled counselling intervention can improve physical activity participation and patient outcomes. METHODS: The Effectiveness of Online Physical Activity Monitoring in Inflammatory Arthritis (OPAM-IA) project is a community-based randomized controlled trial with a delayed control design. We will recruit 130 people with rheumatoid arthritis or systemic lupus erythematosus, who can be physically active without health professional supervision. Randomization will be stratified by diagnosis. In Weeks 1-8, participants in the Immediate Group will: 1) receive education and counselling by a physical therapist (PT), 2) use a Fitbit and a new web-based application, FitViz, to track and obtain feedback about their physical activity, 3) receive 4 biweekly follow-up calls from the PT. Those in the Delayed Group will receive the same program in Week 10. We will interview a sample of participants about their experiences with the intervention. Participants will be assessed at baseline, and Weeks 9, 18 and 27. The primary outcome measure is time spent in moderate/vigorous physical activity in bouts of ≥ 10 min, measured with a portable multi-sensor device in the free-living environment. Secondary outcomes include step count, time in sedentary behaviour, pain, fatigue, mood, self-management capacity, and habitual behaviour. DISCUSSION: A limitation of this study is that participants, who also administer the outcome measures, will not be blinded. Nonetheless, by customizing existing self-monitoring technologies in a patient-centred manner, individuals can be coached to engage in an active lifestyle and monitor their performance. The results will determine if this intervention improves physical activity participation. The qualitative interviews will also provide insight into a paradigm to integrate this program to support self-management. TRIAL REGISTRATION: Date of last update in ClinicalTrials.gov: September 18, 2015. ClinicalTrials.gov Identifier: NCT02554474.

Proof-of-concept study of a Web-based methotrexate decision aid for patients with rheumatoid arthritis.

OBJECTIVE: To assess the extent to which an online patient decision aid reduced decisional conflict and improved self-management knowledge/skills in patients who were considering methotrexate for rheumatoid arthritis (RA). METHODS: We used a mixed-methods pre-post study design. Eligible participants had a diagnosis of RA, had been prescribed methotrexate but were unsure about starting it, and had access to the internet. Outcome included the Decisional Conflict Scale, the Methotrexate in RA Knowledge Test, and the Effective Consumer Scale. Paired t-tests were used to assess changes before and after the intervention. Randomly selected participants were interviewed at the end of the study about their experiences with the decision aid. RESULTS: Of 30 participants, 23 were women. Mean ± SD age was 54.9 ± 14.9 years and the median disease duration was 1 year (interquartile range 0.3-5.0 years). Mean ± SD decisional conflict changed from 49.50 ± 23.17 preintervention to 21.83 ± 24.12 postintervention (change -27.67 [95% confidence interval -39.89, -15.44]; P < 0.001). Knowledge of methotrexate improved (mean ± SD 30.62 ± 9.26 preintervention and 41.67 ± 6.81 postintervention; P < 0.001), but there was no change in effective consumer attributes (mean ± SD 68.24 ± 12.46 preintervention and 72.94 ± 12.74 postintervention; P = 0.15). Three themes emerged from interviews of 11 participants: seeking confirmation of one's own knowledge of methotrexate, amplifying reluctance when they encountered information contradicting their own experiences, and clarifying thoughts about the next step during the process. CONCLUSION: Patients' decisional conflict and knowledge improved after using the patient decision aid. Interview findings further highlighted the power of patients' prior knowledge and experiences with RA on how they approach the information presented in a decision aid.

Usability testing of ANSWER: a web-based methotrexate decision aid for patients with rheumatoid arthritis.

BACKGROUND: Decision aids are evidence-based tools designed to inform people of the potential benefit and harm of treatment options, clarify their preferences and provide a shared decision-making structure for discussion at a clinic visit. For patients with rheumatoid arthritis (RA) who are considering methotrexate, we have developed a web-based patient decision aid called the ANSWER (Animated, Self-serve, Web-based Research Tool). This study aimed to: 1) assess the usability of the ANSWER prototype; 2) identify strengths and limitations of the ANSWER from the patient's perspective. METHODS: The ANSWER prototype consisted of: 1) six animated patient stories and narrated information on the evidence of methotrexate for RA; 2) interactive questionnaires to clarify patients' treatment preferences. Eligible participants for the usability test were patients with RA who had been prescribed methotrexate. They were asked to verbalize their thoughts (i.e., think aloud) while using the ANSWER, and to complete the System Usability Scale (SUS) to assess overall usability (range = 0-100; higher = more user friendly). Participants were audiotaped and observed, and field notes were taken. The testing continued until no new modifiable issues were found. We used descriptive statistics to summarize participant characteristics and the SUS scores. Content analysis was used to identified usability issues and navigation problems. RESULTS: 15 patients participated in the usability testing. The majority were aged 50 or over and were university/college graduates (n = 8, 53.4%). On average they took 56 minutes (SD = 34.8) to complete the tool. The mean SUS score was 81.2 (SD = 13.5). Content analysis of audiotapes and field notes revealed four categories of modifiable usability issues: 1) information delivery (i.e., clarity of the information and presentation style); 2) navigation control (i.e., difficulties in recognizing and using the navigation control buttons); 3) layout (i.e., position of the videos, text, diagrams and navigation buttons); 4) aesthetic (i.e., the colour, look and feel of the online tool). CONCLUSIONS: Although the SUS score indicated high usability before and after major modification, findings from the think-aloud sessions illustrated areas that required further refinement. Our results highlight the importance of formative evaluation in usability testing.

Self-management interventions in the digital age: new approaches to support people with rheumatologic conditions.

Self-management interventions are considered a key component of rheumatologic care. Access to these programmes, however, is an issue for some patients, especially those working full time or living in rural and remote communities. Recently, there has been an increase in the use of digital media technologies to deliver self-management interventions. Digital media (e.g., websites, mobile applications, social networking tools, online games and animation) provide tremendous flexibility for delivering health information and resources at a time and place that is chosen by the individual; hence, they are consistent with the patient-centred approach. This review discusses: (1) innovations in self-management interventions for patients with arthritis and (2) research in the use of digital media for delivering self-management interventions.

New perspectives on the theory of justice: implications for physical therapy ethics and clinical practice.

Recent revisions of physical therapy codes of ethics have included a new emphasis concerning health inequities and social injustice. This emphasis reflects the growing evidence regarding the importance of social determinants of health, epidemiological trends for health service delivery, and the enhanced participation of physical therapists in shaping health care reform in a number of international contexts. This perspective article suggests that there is a "disconnect" between the societal obligations and aspirations expressed in the revised codes and the individualist ethical frameworks that predominantly underpin them. Primary health care is an approach to health care arising from an understanding of the nexus between health and social disadvantage that considers the health needs of patients as expressive of the health needs of the communities of which they are members. It is proposed that re-thinking ethical frameworks expressed in codes of ethics can both inform and underpin practical strategies for working in primary health care. This perspective article provides a new focus on the ethical principle of justice: the ethical principle that arguably remains the least consensually understood and developed in the ethics literature of physical therapy. A relatively recent theory of justice known as the "capability approach to justice" is discussed, along with its potential to assist physical therapy practitioners to further develop moral agency in order to address situations of health inequity and social injustice in clinical practice.

Moral agency as enacted justice: a clinical and ethical decision-making framework for responding to health inequities and social injustice.

This is the second of 2 companion articles in this issue. The first article explored the clinical and ethical implications of new emphases in physical therapy codes of conduct reflecting the growing evidence regarding the importance of social determinants of health, epidemiological trends for health service delivery, and the enhanced participation of physical therapists in shaping health care reform in a number of international contexts. The first article was theoretically oriented and proposed that a re-thinking of ethical frameworks expressed in codes of ethics could both inform and underpin practical strategies for working in primary health care. A review of the ethical principle of "justice," which, arguably, remains the least consensually understood and developed principle in the ethics literature of physical therapy, was provided, and a more recent perspective-the capability approach to justice-was discussed. The current article proposes a clinical and ethical decision-making framework, the ethical reasoning bridge (ER bridge), which can be used to assist physical therapy practitioners to: (1) understand and implement the capability approach to justice at a clinical level; (2) reflect on and evaluate both the fairness and influence of beliefs, perspectives, and context affecting health and disability through a process of "wide reflective equilibrium" and assist patients to do this as well; and (3) nurture the development of moral agency, in partnership with patients, through a transformative learning process manifest in a mutual "crossing" and "re-crossing" of the ER bridge. It is proposed that the development and exercise of moral agency represent an enacted justice that is the result of a shared reasoning and learning experience on the part of both therapists and patients.

Improving healthcare consumer effectiveness: an Animated, Self-serve, Web-based Research Tool (ANSWER) for people with early rheumatoid arthritis.

BACKGROUND: People with rheumatoid arthritis (RA) should use DMARDs (disease-modifying anti-rheumatic drugs) within the first three months of symptoms in order to prevent irreversible joint damage. However, recent studies report the delay in DMARD use ranges from 6.5 months to 11.5 months in Canada. While most health service delivery interventions are designed to improve the family physician's ability to refer to a rheumatologist and prescribe treatments, relatively little has been done to improve the delivery of credible, relevant, and user-friendly information for individuals to make treatment decisions. To address this care gap, the Animated, Self-serve, Web-based Research Tool (ANSWER) will be developed and evaluated to assist people in making decisions about the use of methotrexate, a type of DMARD. The objectives of this project are: 1) to develop ANSWER for people with early RA; and 2) to assess the extent to which ANSWER reduces people's decisional conflict about the use of methotrexate, improves their knowledge about RA, and improves their skills of being 'effective healthcare consumers'. METHODS/DESIGN: Consistent with the International Patient Decision Aid Standards, the development process of ANSWER will involve: 1.) creating a storyline and scripts based on the best evidence on the use of methotrexate and other management options in RA, and the contextual factors that affect a patient's decision to use a treatment as found in ERAHSE; 2.) using an interactive design methodology to create, test, analyze and refine the ANSWER prototype; 3.) testing the content and user interface with health professionals and patients; and 4.) conducting a pilot study with 51 patients, who are diagnosed with RA in the past 12 months, to assess the extent to which ANSWER improves the quality of their decisions, knowledge and skills in being effective consumers. DISCUSSION: We envision that the ANSWER will help accelerate the dissemination of knowledge and skills necessary for people with early RA to make informed choices about treatment and to manage their health. The latest in animation and online technology will ensure ANSWER fills a knowledge translation gap, focusing on the next generation of people living with RA.