ABSTRACT
BACKGROUND: The James Lind Alliance (JLA) offers a method for research priority setting with patients, clinicians and carers. The method is increasingly used but publications primarily discuss the outcome of such projects, rather than reflecting on the JLA method itself. Scrutiny of the method is crucial in order to understand and correctly interpret its outcomes. METHODS: We conducted a qualitative interview study with people involved in a JLA project into Juvenile Idiopathic Arthritis (JIA) (n = 30) to better understand the mechanisms, procedures and decisional processes during such a project and to formulate recommendations for those who consider starting a JLA project in the future. RESULTS: Four main themes were identified: 1) motivations, goals and expectations 2) inclusivity, roles and representation 3) procedures and decision-making 4) outcomes and future steps. CONCLUSION: While the top 10 of 'evidence uncertainties' seems to take the centre stage in JLA projects, the ways in which these priorities are determined may be influenced by 'process uncertainties'. We have formulated ten specific recommendations for future JLA projects. Reflection on and reporting of these process uncertainties would contribute to the improvement of JLA projects and increase the validity of the outcome of such projects.
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Background: Involving patients' representatives in the research and development of medicinal products (medicines R&D) leads to better medical treatment. In 2014, the European Patients' Academy on Therapeutic Innovation (EUPATI) was started with the goal of increasing the capacity and capabilities of patient representatives in this field. To make this academy more accessible and applicable for the Netherlands, a Dutch version was launched in September 2019. To explore the options for a durable infrastructure for organizing the Dutch EUPATI course, a multi-stakeholder qualitative study was done. The views of various stakeholders from pharmaceutical industry, governmental organizations, patient organizations, and the academic world were examined about the benefits and challenges of this course for patient involvement in medicines R&D. Methods: From April to June 2019, 10 semi-structured interviews were completed, each with two representatives of all stakeholders involved. In addition, individual Dutch graduates of the European EUPATI (EUPATI fellows) were consulted via an e-mail questionnaire. Using a directed content analysis based on the Business Canvas Model, the transcribed interviews were coded, analyzed, and final attributes consolidated. Results: The semi-structured interviews and completed questionnaires explored how the stakeholders are aiming to assist patient involvement in medicines R&D through the Dutch EUPATI course. The building blocks of the Business Canvas Model were described with concrete attributes for making the business case. Stakeholders stated that the Dutch EUPATI course was an incentive for patient involvement in medicines development, for patient-oriented research and outcomes, for the availability of patient representatives (expert ones in particular), and for the content and representation quality of patient representatives. The key values for collaborating in the network as mentioned by the stakeholders were neutrality, patients' interests, equality, independence, shared objectives, long-term commitment, transparency, understanding, trust, and respect. Conclusions: Patient involvement in medicines R&D is evolving and the demand for qualified patient representatives is growing. Dutch stakeholders confirmed the added value of the patients' academy and expressed their willingness to contribute. Important values and conditions for long term collaboration were formulated.
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BACKGROUND: Research on Juvenile Idiopathic Arthritis (JIA) should support patients, caregivers/parents (carers) and clinicians to make important decisions in the consulting room and eventually to improve the lives of patients with JIA. Thus far these end-users of JIA-research have rarely been involved in the prioritisation of future research. MAIN BODY: Dutch organisations of patients, carers and clinicians will collaboratively develop a research agenda for JIA, following the James Lind Alliance (JLA) methodology. In a 'Priority Setting Partnership' (PSP), they will gradually establish a top 10 list of the most important unanswered research questions for JIA. In this process the input from clinicians, patients and their carers will be equally valued. Additionally, focus groups will be organised to involve young people with JIA. The involvement of all contributors will be monitored and evaluated. In this manner, the project will contribute to the growing body of literature on how to involve young people in agenda setting in a meaningful way. CONCLUSION: A JIA research agenda established through the JLA method and thus co-created by patients, carers and clinicians will inform researchers and research funders about the most important research questions for JIA. This will lead to research that really matters.
Subject(s)
Arthritis, Juvenile/therapy , Biomedical Research/methods , Patient Participation/methods , Adolescent , Biomedical Research/organization & administration , Caregivers , Child , Cooperative Behavior , Decision Making , Focus Groups , Humans , Netherlands , Physicians , Research DesignABSTRACT
BACKGROUND AND AIM: The role of burn survivors in burn research is usually restricted to being objects of study and beneficiaries of research results, while decision-making on research is traditionally the domain of a small group of experts, mainly scientists. In this article we compare the research priorities of burn survivors and professionals and investigate to what extent it is possible to come to a joint research agenda. METHODOLOGY: The project followed the Dialogue Model for research agenda setting. Initially burn survivors and professionals were consulted separately and group-specific lists of research priorities were established, using a literature survey, exploratory interviews (n=10), focus groups (n=58), a questionnaire (n=224) and Delphi rounds (n=12). Subsequently, in a dialogue meeting burn survivors and professionals presented and discussed their priorities, developed one integrated list, and prioritized the 15 most important topics on this list. RESULTS: Considerable overlap was observed between the research priorities of burn survivors and professionals, particularly with respect to biomedical and clinical research on wound healing and scar management. However, differences were also observed, e.g. treatment of itching and oedema on scars and donor places. CONCLUSION: The model proved useful in eliciting research priorities from both professionals and burn survivors, and in stimulating a meaningful dialogue between these groups. The involvement of burn survivors identified burn research areas that are currently not the focus of research in The Netherlands.
