RESUMO
BACKGROUND: Patient participation in decision-making on health-related research has gained ground. Nineteen Dutch health-related research-funding organisations (HFs) have taken up the challenge to include patients in their funding process. A 'Patient participation (PP) advisory team' was set-up, with HF-representatives and patient advocates, who together initiated this study. We provide an overview of when, why, and how PP activities take place in HFs' funding processes, share main challenges and identify possible solutions. METHODS: A qualitative research design was used. Data was gathered by questionnaires (n = 14) and semi-structured interviews (n = 18) with HF employees responsible for patient participation, followed by a workshop (n = 27) with involved employees of HFs and key players in PP from national patient organisations and research organisations. A descriptive analysis was used for the questionnaire. A semi-directed content analysis was used for the interviews and the workshop. RESULTS: Three stages can be identified in the funding process in which HFs carry out PP activities: (1) strategic decision-making about focus of research (e.g. shared research agendas); (2) call for and receipt of research proposals (e.g. mandatory inclusion of letter of recommendation from patient organisation); (3) decision-making about the funding of research proposals (e.g. patients reside in a patient panel to co-review research proposals). Main challenges identified to carry out PP activities include: how to accommodate diversity of the patient body (mainly encountered in stage 1 and 3); to what extent should patients receive training to successfully participate (mainly encountered in stage 1 and 3); and who is responsible for patient-researcher dialogues (mainly encountered in stage 1 and 2). All nineteen HFs agree that patients should be included in at least one stage of the funding process for health-related research. CONCLUSION: Further broadening and optimising patient involvement is still needed. The proposed solutions to the identified challenges could serve as inspiration for national and international research funding foundations that aim to structurally include patients in their funding process.
RESUMO
BACKGROUND: Self-tests enable the identification of (risk factors for) diseases and are carried out on the user's initiative without medical indication or advice and often unaided by a health professional. They are frequently used, and their availability and usage are expected to grow. Self-testing has both advantages and disadvantages. Making a well-informed decision about whether to self-test and which self-test to use is of major importance. OBJECTIVE: To provide insights into the experiences of self-test users, identifying reasons to self-test and perceived (dis)advantages of using self-tests and the information highlighted as relevant by self-test users to make well-informed decisions. METHODS: In a qualitative study, 28 users of a wide variety of self-tests shared their experiences in focus groups and interviews. RESULTS: Perceived disadvantages of self-testing included the following: a wide range of available self-tests, lack of insights into their reliability and content, possibility of mistakes in administering them, possibility of false-positive and false-negative results, lack of clarity about how to interpret results and consequently what action to take and fear of not being taken seriously by a general practitioner. Self-test aspects that were viewed as most important include informed decision making, user-friendliness, usefulness and reliability of results. CONCLUSION: A decision aid for future self-test users can help people make a deliberate decision on whether to use a self-test and which particular self-test to use from the wide range available. The government, health professionals, patient organizations, consumer organizations and citizens all have a role to play in the development and implementation of a decision aid.
