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OBJECTIVES: This study explored self-reported knowledge and interest to learn more about medicines research, development and health technology assessment among Finnish general public. It also aimed to define possible knowledge gaps and needs for public education regarding these topics. DESIGN: Online survey with 503 participants. The questionnaire was originally developed as a part of the Needs Assessment Work Package of the European Patients' Academy on Therapeutic Innovation Project. The survey was carried out in Finland in 2019. METHODS: The survey was conducted as an online survey by Kantar TNS Gallup Forum online panel. The data were analysed by using the freely available programming language R. Relationships between the demographic characteristics (such as age, gender and education level) of respondents and their knowledge or interest in medicines research and development were determined using Pearson's χ2 tests. Statistically significant responses of demographic characteristics in the respondents' knowledge or interest in medicines research were determined by logistic regression. RESULTS: Of the 503 respondents (age 16-64) only 12% reported having good or very good knowledge of medicines research and development in general. Regarding health technology assessment, pharmacoeconomics and regulation, the percentage of respondents reporting good or very good knowledge was as low as 8%. Respondents were most interested in learning more about predictive and personalised medicine (47%) and least interested in medicines regulation (30%) and pharmacoeconomics (31%). CONCLUSIONS: Self-reported knowledge about medicines research and development and health technology assessment appears to be very low in Finland. Patient and public participation is recognised as an important and essential element in up-to-date medical research and assessment of new treatments. In order to participate as an active and equal partner in these processes, the public needs more information and education in these topics.
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Investigación Biomédica , Evaluación de la Tecnología Biomédica , Adolescente , Adulto , Finlandia , Humanos , Persona de Mediana Edad , Evaluación de Necesidades , Encuestas y Cuestionarios , Adulto JovenRESUMEN
Background: The European Patients' Academy on Therapeutic Innovation Switzerland (EUPATI CH) was established as an association in 2016 with the mission to improve patient empowerment in Switzerland, raise public awareness of EUPATI's education material, and foster multi-stakeholder partnerships in order to promote public involvement in all aspects of medicines research and development (R&D). In order to achieve its goal of improving patient involvement (PI) in all processes of medicines R&D in Switzerland and to obtain guidance and recommendations for future activities, EUPATI CH initiated a multi-stakeholder survey on PI experiences, hurdles, and best practices. The survey enabled EUPATI CH to obtain and analyze the views of various stakeholders and shape its workplan. Methods: Data collection occurred between January and July 2019 using a survey and semi-structured interviews with individual stakeholders from different groups. The online survey responses were analyzed using quantitative methods and the interviews were analyzed using qualitative methods. Results: The online survey was completed by 55 respondents (10%), and the semi-structured interviews were conducted with 14 stakeholders. Respondents to the online survey were patient representatives (45%), researchers from academia (25%), individuals from the pharmaceutical industry (9%), healthcare professionals (23%), and representatives from government agencies (6%). Some respondents were also members of EUPATI CH. Thirty-eight percent of respondents consider PI in Switzerland to be limited or absent. They identified the main barriers to PI as, first and foremost, a lack of funds and human resources (65%), followed by a lack of information and a lack of education on how to become a patient advocate (21%), a lack of collaboration with other stakeholders (16%), and a lack of adequate resources. Respondents' expectations of EUPATI CH's role in supporting PI were to provide education for active PI and improve networking and collaboration among stakeholders. Conclusions: EUPATI CH's multi-stakeholder research identified some of the difficulties in promoting PI in medicines R&D in Switzerland, in particular the complex collaboration among stakeholders and a lack of funds, human resources, and knowledge. To respond to these difficulties, EUPATI CH has begun preparing a basic training course for patients that is adapted to Switzerland.
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The Copenhagen Centre for Regulatory Science (CORS) and Biopeople at the University of Copenhagen held a workshop in May 2015 titled "Patient Involvement in Medicines Development and Approvals: A Paradigm Shift Towards True Patient Impact in Medicines Development and Regulatory Science" that acknowledged the importance of having patients more involved in the entire process of medicines research and development (R&D) and life cycle management. Four key stakeholders, representing patients, academia, industry, and regulatory authorities, each gave their view and perspective on the status and challenges of current patient involvement. From the 3 breakout sessions, it was concluded that patient-reported outcomes (ie, the report of the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else), was considered as an important tool when deciding endpoints. It was agreed that professionalization of the patient within medicine R&D to some extent would be necessary for obtaining influence. However, the industry should also seek to accommodate to the patient instead of waiting passively for patients to become educated. A much better organized and stronger involvement of patients was called for. However, this should not only rely on goodwill, but should preferably be implemented by legal requirements, so as to secure compliance by all stakeholders. An independent platform with the purpose of providing access to patient experience was proposed. A research and educational center such as CORS, which was founded on cross-sectorial and cross-disciplinary cooperation, is an example of an institution that could be a good starting point for hosting such a platform.