Abstrakti
The involvement of patients and patient organisations in health technology assessment (HTA) has become increasingly common in recent decades. This also applies to decision-making on the reimbursement and uptake of new medicines. The purpose of this dissertation was to describe patient organisations’ participation and experiences of involvement in the medicine-related consultation processes of Finland’s Pharmaceutical Pricing Board (Hila) and the Council for Choices in Healthcare (Palko). The study investigated the extent to which patient organisations have provided submissions to Hila and Palko, how patient organisation representatives perceive their participation and involvement, preparation of submissions and the possible challenges of this, and how the authorities use patient organisations’ submissions in decision-making on recommendations and reimbursement. The knowledge gained from this study can be used to improve the operations of both patient organisations and the authorities. This dissertation consists of four studies (I–IV) and a summary that examines the implementation of patient involvement based on Sherry Arnstein’s ladder of participation and the Quality Standards for Patient Involvement of Health Technology Assessment International (HTAi). The results indicate that patient organisations have welcomed the opportunity to provide submissions. Submissions have been most frequently made regarding medicines in the categories of cancer drugs and immunomodulators, as well as musculo-skeletal system. There were challenges associated with making submissions. For example, it is difficult to document patient experiences with new medicines, and patient organisations have limited resources to prepare submissions. Lack of expertise was also an obstacle. From the authorities’ perspective, patient organisation submissions do not always correspond to the matter under consideration, partly because the details about the medicines’ price and reimbursement applications received by Hila are not public. For the authorities, the most valuable statements were those that enhanced their understanding of the overall treatment of patients, rare diseases and treatments with limited scientific evidence. However, the submissions were of minor importance in the decision-making process. According to the findings, limited staff resources were a challenge also in government agencies, and they constituted a barrier to developing models and communication that supported patient organisations’ involvement. At the organisational level, patient organisations and public authorities have worked together on a long-term basis. However, according to the patient organisations, the provision of submissions was perceived as one-way communication, and the experience of involvement was rather poor. According to the HTAi’s Quality Standards for Patient Involvement in HTA, communication and information on consultation opportunities and timelines are fairly well implemented in Hila and Palko, but there are shortcomings in providing feedback, reporting and the documentation of patient perspectives. On Arnstein’s scale of participation, giving opinions is seen as a form of tokenism, as the person or organisation doing so is not aware of how their views are used in decision-making. The experience of involvement and the openness and transparency of decision-making could be strengthened by including a patient or civil society representative in Hila’s and Palko’s expert groups and decision-making bodies, by documenting the debate on the issue and opening it up to the public, and by providing feedback on submissions and their relevance.
Alkuperäiskieli | suomi |
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Valvoja/neuvonantaja |
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Julkaisupaikka | Helsinki |
Kustantaja | |
Painoksen ISBN | 978-952-84-0382-1 |
Sähköinen ISBN | 978-952-84-0381-4 |
Tila | Julkaistu - 2024 |
OKM-julkaisutyyppi | G5 Tohtorinväitöskirja (artikkeli) |
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