The Collins English Dictionary defines the word care as follows: “to provide for physical needs, help or comfort (for)” (1). Therefore, it is not surprising that when researchers from Europe and North America decided to explore and evaluate innovations in nonpharmacologic, nonsurgical research in the arthritis field, the ensuing series of conferences were named the CARE conferences. To date, there have been 4 CARE conferences. Each conference, although unique, has been linked by themes generated by the former conference. These conferences are well documented, and information is disseminated through publications (2–9). CARE IV, entitled CARE in Action, was held in the UK in September 2006 (10).
A total of 65 stakeholders comprising leading arthritis researchers, recipients of care, and policy and decision makers from a variety of professions attended the conference. The stakeholders represented Canada, mainland Europe, the UK, and the US. CARE III had generated 7 topics for future discussion, and these were consolidated into 4 conference themes: implementation of effective research and models of care, knowledge transfer and health professional education, quality of life and patient-centered approach to measuring health and well-being, and the future of the CARE conferences. The sessions were informal and interactive. In this article, an overview of each session, including the conclusions, and discussion of future activities are provided. Information about CARE IV, including handouts of the slide presentations with sound recordings and a list of attendees with contact addresses, is available at www.leeds.ac.uk/CAREIV/.
Implementation of Effective Research and Models of Care
Previous CARE conferences highlighted the benefits of regular exercise/physical activity, self-management, and patient education interventions in helping patients cope with rheumatic conditions. However, these findings are not routinely translated into effective health care practices and as a result, few patients receive these interventions. The implementation session was organized to acknowledge, understand, and address barriers and facilitators to the implementation of nonpharmacologic interventions. Experts in implementation science, researchers, and research consumers actively engaged in dialogue to develop strategies to transform theory and research evidence into effective clinical practice.
Communicating research findings is vital to implementing effective research. In the opening session on implementation, the presenter reviewed the specific difficulties and complexities associated with reporting nonpharmacologic interventions such as a lack of double blinding, volunteer bias, small sample size, and ultimately lack of statistical power to detect group differences (6, 11). The CLEAR NPT (11), a checklist constructed to help improve reports of complex health care interventions, was described.
In keynote presentations, the speakers described the challenges involved in implementing effective health care for populations with chronic illness. They provided best practices for facilitating implementation and measuring the impact of chronic disease self-management, particularly techniques relevant for persons with rheumatic conditions. The RE-AIM model (12) focuses on strategies to assess the external validity of findings and promote adoption and sustainability of interventions such as guides for intervention adoptees. Studies investigating the implementation of effective health care in arthritis followed the keynote sessions. These presentations and discussions of the researcher's experiences, successes, and failures highlighted the difficulties encountered when trying to implement what (we think) we know and emphasized the effort needed to change individual (patients' and practitioners') attitudes, behaviors, and beliefs while addressing organizational, environmental, and social resistance to change.
Informed by these presentations, breakout groups were asked to identify perceived barriers to implementing exercise/physical activity, self-management, and patient education interventions from the health care providers' and patients' perspectives in their respective countries and to pinpoint strategies to overcome barriers to implementation. Participants suggested several possible barriers loosely termed extrinsic (influenced by environmental factors), intrinsic (influenced by an individual), and research factors (Table 1). The difficulties in surmounting these barriers were not underestimated. However, possible solutions were suggested. Participants believed interventions need to be designed that focus on large and immediate clinical effects or have significant cost savings. It was believed that many of the extrinsic barriers could be overcome with more resources, but these are unlikely to be forthcoming. Even if adequate resources were made available, inflexible organizational and system constraints were thought to impede implementation. Barriers to implementation believed to be modifiable were those attributed to research design factors. Engaging patients earlier in the design of nonpharmacologic interventions and integrating patient feedback is one strategy that will simplify implementation, enhance practicality, and reduce expense (both cost and human resource). Participants emphasized the need for practice-based evidence rather than evidence-based practice. At the end of the session, participants better appreciated the difficulties and complexities involved in translating good research into effective clinical practice and were presented with practical examples of how this can be accomplished and communicated (Table 1).
|Political barriers: low priority of rheumatic conditions in the hierarchy of health policy||Lobby government, health authorities, policy makers, commissioners, and clinicians to prioritize rheumatic problems higher|
|Emphasize large and growing size of these chronic health problems|
|Organizational and system barriers||Illustrate techniques that improve management and can ease organizational difficulties|
|Develop practical, effective models of health care for the real world|
|Financial barriers: limited health care budgets||Lobby for greater resources for nonpharmacologic care, evaluate efficiency for care delivery|
|Logistical barriers: limited facilities available||Increase resources to enable access to facilities so persons with arthritis can self-manage through exercise, nutrition, self-help groups|
|Partner with existing community-based resources|
|Intervention messages are not popular: informing people there is no magic bullet, advising them to be more active and that a healthy lifestyle will help but will not cure them||There is no denying this, but patients appreciate the difference exercise, self-management can make in their lives|
|Health care practitioners, providers, and patients are comfortable with what they know, are often resistant to change; interventions that require effort and commitment are less likely to be implemented||Interventions need to address social norms, health beliefs, attitudes, and barriers and provide realistic strategies and contingency plans to address barriers|
|Prolonged, complex, expensive research interventions are unlikely to be adopted, and need to be adapted or reinvented to be effective in the clinical context||Researchers need to consider the clinical practicability of interventions at the design stage to facilitate implementation Incorporate feedback from patients in intervention designs|
|While transfer of knowledge to the scientific community is essential, less effort is given to informing clinicians and patients about advancements in nonpharmacologic interventions||More effort to transfer knowledge to clinicians and patients through changes in health professional curriculum, press releases of well- designed studies, and implementation of evidence-based practice guidelines|
The body of knowledge and experience in arthritis care has grown rapidly. However, in daily practice stakeholders in arthritis care are only partly aware of and use research evidence to inform their decision making (13, 14). The process of translation of science into practice deserves our utmost attention if we plan to safeguard accessible and high-quality care for our patients. Knowledge translation can be defined as “the exchange, synthesis and ethically sound application of researcher findings within a complex system of relationships among researchers and knowledge users” (13, 14). At present, scientists use a number of frameworks to plan knowledge translation, including knowledge transfer strategies targeting policy makers (15, 16) and the Ottawa Model of Research Use (17).
CARE IV emphasized the importance of patients/consumers in knowledge translation because patients' needs for information and participation in decision making are not always recognized (15–17). Sessions included discussions on strategies to address professional education of researchers and health professionals to incorporate the evolving roles of patients and an examination of professional competencies and curricula from across the globe.
Strategies to enhance patient participation can be directed at patients (e.g., self-management programs, user-friendly Cochrane reviews, or peer support), at health professionals (patient-centered approaches to care delivery), or at both (e.g., decision aids) (18). Specific measurement instruments are needed to evaluate the effectiveness of these strategies. The Canadian Effective Consumer Outcome Scale is one recent example of an instrument to assess patient participation in care (19) that was discussed during the conference. An example of effective collaboration between patients and various stakeholder groups to improve access to care and education for persons living with arthritis was illustrated by a presentation on the results of the Summit on Standards for Arthritis Prevention and Care (20). This Canadian conference developed standards of arthritis prevention and care, defined as evidence-based authoritative statements of minimal level of acceptable performance that were concrete, pragmatic, actionable, and responsive to the needs of persons with arthritis (20).
Health professional education in arthritis has evolved. Although educational systems vary among countries, international collaboration regarding the definition of basic competencies for arthritis care providers is feasible. The UK has recently developed a structured multidisciplinary education program for rheumatology practitioners (21). This program integrates distance learning, using online study materials, blogs, discussion boards, and telephone/e-mail support as venues for information dissemination. The success of the program combined with its integration of technology and multidisciplinary nature make this program a promising approach for the development of educational programs in other countries. The American College of Rheumatology is also involved in the development of an Internet-based educational program for nurse practitioners to be launched in 2008. Such programs can be used to address training and resource needs across the globe. As these programs develop, the role of patient organizations in curricular design should be explored.
Measuring Outcomes Using a Patient-Centered Approach
This session was designed to build on the previous work undertaken at the CARE conferences (4), with a particular emphasis on exploring the theoretical underpinnings and applications of patient-centered outcome measurement. The focus for the session was to identify concepts and explore relevance of quality of life, function, activity, and participation in relation to the International Classification of Functioning, Disability and Health (ICF) framework, and to provide examples of practical applications of patient-centered outcome measurement.
This session began with an overview of the link between the ICF and patient-centered outcomes, highlighting the importance of contextual factors in the ICF. Specifically, the presentation emphasized the need and difficulty of representing personal factors, which are not included in the ICF and which serve as “scene setters” for understanding the patient-related outcomes. The session also included a patient presentation that provided a moving account of outcomes deemed important from a patient's perspective. In the talk, the patient mapped her personal journey through the initial symptoms, diagnosis, and care, highlighting many instances where her needs were not considered. Following this session was a presentation on issues related to measuring work impairment in rheumatologic diseases and a summary of the development of the Rheumatoid Arthritis Work Instability Scale (RA-WIS) (22), an outcome measure assessing the impact of rheumatoid arthritis on work instability.
The final session on outcomes included an overview of quality of life (QOL), health-related QOL and health status, and recent advances in QOL measurement: the needs-based QOL approach (23). The term quality of life, it was argued, has been misrepresented within the health field as it is often used to describe impairment, functional limitations, and disability. QOL was defined as embracing subjective well-being and life satisfaction. As such, health status and health-related QOL, which focus on body impairment, activities, and participation, cannot capture the full aspect of QOL. The needs-based QOL approach was also discussed. This method is based upon a validated development technique involving in-depth qualitative interviews with relevant patients and has been used to develop a number of disease-specific (depression , rheumatoid arthritis , psoriasis , psoriatic arthritis , ankylosing spondylitis , and multiple sclerosis) QOL tools. Using this model, the needs relevant to each condition are identified, maximizing the content validity and responsiveness of the final instruments.
Discussions and brief presentations on current research activities during the session highlighted the need for innovative and creative practices in making outcomes more patient centered. There was a general consensus that the term patient-oriented outcomes was often misused, with concern expressed that outcome measures are too often derived from what clinicians, rather than patients, deem to be important. The fundamental flaw in this approach is that clinicians are more likely to catastrophize disability and ignore the socioeconomic and psychosocial issues, and are simply not good at predicting what patients consider important. Indeed, it was argued that developing and validating outcome tools without the inclusion of patients' needs may be invalid and compromises the usefulness, validity, and accuracy of the tool.
The Future of CARE
The future role of CARE was the focus on the last day of the CARE IV meeting. The session began with presentations by representatives from the European League Against Rheumatism (EULAR; Peter Oesch), Pan American League of Associations for Rheumatology (PANLAR; Carol Oatis), British Health Professionals in Rheumatology (BHPR; Jackie Hill), and Association of Rheumatology Health Professionals (ARHP; Catherine Backman). Each presenter outlined their views about potential roles of CARE in relation to their respective organization. This was followed by a proposed framework for CARE V. Attendees were divided into 4 groups to discuss 3 questions: What is the role of CARE in the arthritis community? What are CARE's short-term and long-term goals? What are the facilitators and barriers to achieving these goals? This section summarizes the ideas discussed, including CARE's current strengths, weaknesses, possible roles, and immediate tasks.
Participants identified 3 areas of strength: the collaboration among European and North American stakeholders in care research; the informal multidisciplinary network among researchers, patients, and clinicians; and the small group size. Participants acknowledged that CARE provides a forum for arthritis care researchers to share ideas and collaborate. Since CARE I, a few joint projects have been initiated, including the Safety Trial of Adalimumab in Rheumatoid Arthritis (STAR) project (Sweden, Norway, The Netherlands) and the Physiotherapist in Arthritis Care Survey (Canada, The Netherlands). Working relationships are strengthened through ongoing e-mail communications among CARE delegates and face-to-face meetings at the conferences.
Patient involvement was another area of strength. Over the years, CARE has established a working relationship with patient groups concerning information exchange to foster the sharing of relevant findings directly with patients and allow patients input into the future research agenda and process of information dissemination. The small group format fosters mentorship for new investigators and trainees.
As a new organization, CARE's major weaknesses are the lack of stable funding, lack of a clear definition of its role, and its low profile. Funding was perceived as a major barrier preventing the evolution of CARE from a conference-planning group to an organization that impacts arthritis care and research. As CARE might overlap with the roles of other organizations such as EULAR and Outcome Measures in Rheumatology Clinical Trials (OMERACT), more partnerships are needed to move CARE forward.
Participants suggested future roles of CARE, such as serving as 1) a multidisciplinary think tank to monitor shortfalls of the current research and identify research needs, 2) a hub for knowledge management, and 3) a community for mentoring CARE researchers and patient advocates. As such, CARE could provide recommendations to other organizations such as EULAR, ARHP, and OMERACT, which have an existing infrastructure to support and conduct further research. CARE can also serve to inform the development of international training standards and education resources or act as a conduit for researchers, patients, policy makers, and clinicians to work together in developing relevant research and clinical agendas that matter to persons with arthritis. For patients/consumers, CARE could play a role in collecting, organizing, and sharing resources for patient education and advocacy. Online technology is an important component for this effort. Finally, CARE should continue to mentor new researchers, trainees, and patient advocates. The next CARE conference is planned for April 2008 in Oslo, Norway.