[The challenges faced by researchers involving patients as partners in research].

This review presents recent findings from the literature on the challenges that researchers may face, when patients get involved as partners in research: which patients to recruit, how to clarify and set boundaries to the roles of the patient and the researcher, and how to evaluate the outcome of involvement. Patient involvement may challenge the professional identity of a researcher. Researchers are often uncertain about how to establish a meaningful collaboration with partners whose knowledge comes from the lived experience of being a patient.

The Development of Complex Digital Health Solutions: Formative Evaluation Combining Different Methodologies.

BACKGROUND: The development of digital health solutions for current health care settings requires an understanding of the complexities of the health care system, organizational setting, and stakeholder groups and of the underlying interplay between stakeholders and the technology. The digital health solution was founded on the basis of an information and communication technology platform and point-of-care devices enabling home-based monitoring of disease progression and treatment outcome for patients with rheumatoid arthritis (RA). OBJECTIVE: The aim of this paper is to describe and discuss the applicability of an iterative evaluation process in guiding the development of a digital health solution as a technical and organizational entity in three different health care systems. METHODS: The formative evaluation comprised the methodologies of contextual understanding, participatory design, and feasibility studies and included patients, healthcare professionals, and hardware and software developers. In total, the evaluation involved 45 patients and 25 health care professionals at 3 clinical sites in Europe. RESULTS: The formative evaluation served as ongoing and relevant input to the development process of the digital health solution. Through initial field studies key stakeholder groups were identified and knowledge obtained about the different health care systems, the professional competencies involved in routine RA treatment, the clinics' working procedures, and the use of communication technologies. A theory-based stakeholder evaluation achieved a multifaceted picture of the ideas and assumptions held by stakeholder groups at the three clinical sites, which also represented the diversity of three different language zones and cultures. Experiences and suggestions from the patients and health care professionals were sought through participatory design processes and real-life testing and actively used for adjusting the visual, conceptual, and practical design of the solution. The learnings captured through these activities aided in forming the solution and in developing a common understanding of the overall vision and aim of this solution. During this process, the 3 participating sites learned from each other's feed-back with the ensuing multicultural inspiration. Moreover, these efforts also enabled the consortium to identify a 'tipping point' during a pilot study, revealing serious challenges and a need for further development of the solution. We achieved valuable learning during the evaluation activities, and the remaining challenges have been clarified more extensively than a single-site development would have discovered. The further obstacles have been defined as has the need to resolve these before designing and conducting a real-life clinical test to assess the outcome from a digital health solution for RA treatment. CONCLUSIONS: A formative evaluation process with ongoing involvement of stakeholder groups from 3 different cultures and countries have helped to inform and influence the development of a novel digital health solution, and provided constructive input and feedback enabling the consortium to control the development process.

Development of a Web-Based Health Care Intervention for Patients With Heart Disease: Lessons Learned From a Participatory Design Study.

BACKGROUND: The use of telemedicine technologies in health care has increased substantially, together with a growing interest in participatory design methods when developing telemedicine approaches. OBJECTIVE: We present lessons learned from a case study involving patients with heart disease and health care professionals in the development of a personalized Web-based health care intervention. METHODS: We used a participatory design approach inspired by the method for feasibility studies in software development. We collected qualitative data using multiple methods in 3 workshops and analyzed the data using thematic analysis. Participants were 7 patients with diagnosis of heart disease, 2 nurses, 1 physician, 2 systems architects, 3 moderators, and 3 observers. RESULTS: We present findings in 2 parts. (1) Outcomes of the participatory design process: users gave valuable feedback on ease of use of the platforms' tracking tools, platform design, terminology, and insights into patients' monitoring needs, information and communication technologies skills, and preferences for self-management tools. (2) Experiences from the participatory design process: patients and health care professionals contributed different perspectives, with the patients using an experience-based approach and the health care professionals using a more attitude-based approach. CONCLUSIONS: The essential lessons learned concern planning and organization of workshops, including the finding that patients engaged actively and willingly in a participatory design process, whereas it was more challenging to include and engage health care professionals.

Is the planned and ongoing project (POP) database a suitable tool to reduce duplication in the process of assessing new health technologies in the European Union? Preliminary experience in the context of the EUnetHTA Joint Action Project Framework (2010-2012).

OBJECTIVES: The European Network for Health Technology Assessment (EUnetHTA) Joint Action Project Framework, 2010-12, Work Package 7B (WP 7B), was aimed at facilitating collaboration between HTA agencies to avoid duplication of assessment efforts. A major task of WP 7B was to collect information on planned and ongoing (POP) projects by EUnetHTA agencies and to incorporate this information in a POP Database. We analyzed whether the Database served its intended purpose. METHODS: A survey was sent to all fifty-seven EUnetHTA partners, complemented by telephone interviews with the Ludwig Boltzmann Institute of HTA in Austria (lead institution). Furthermore, detailed documentation on the activities of the POP Database was provided to the research team at CAST (University of Southern Denmark) by the lead institution. RESULTS: Forty-two of fifty-seven agencies (74 percent) responded to the survey. Eleven collaborations initiated by agencies themselves were reported. The scope of these collaborative activities was usually limited to information exchange on for example literature search protocols. A slight reduction of duplication of effort was documented. In addition, twelve collaborations at the full report level were initiated by the lead institution. CONCLUSION: While the POP Database has the potential to reduce duplication of effort, this has not been realized during the 3-year period of the EUnetHTA Joint Action Project Framework, 2010-12. Further evidence needs to be gathered to determine whether the POP Database is effective and whether the benefits outweigh the resources required to maintain it.