Potilasjärjestöjen lausunnot lääkkeiden hintalautakunnalle ja terveydenhuollon palveluvalikoimaneuvostolle: järjestöjen ja viranomaisten kokemuksia
Keywords:
Lääkkeiden hintalautakunta, Terveydenhuollon palveluvalikoimaneuvosto, potilasjärjestölausunnot, potilasjärjestöt, osallisuus, lääkkeetAbstract
Patient organisations in Finland can provide written submissions to the Pharmaceuticals Pricing Board on medicines under review and comment on draft recommendations by the Council for Choices in Health Care in Finland. These opportunities to increase participation of patient organisation have been available since 2016, allowing them to bring the perspectives of those affected by illness into the decision-making processes of government agencies.
The experiences of patient organisations in providing submissions on medicines or of authorities in utilising these submissions have not been previously studied in Finland. This study surveyed the experiences of both patient organisations and authorities on patient organisations' medicine-related submissions and any associated challenges. The information and training needs of patient organisations related to submission processes were also investigated.
The study data consisted of semi-structured theme interviews with representatives of patient organisations (n=14) and officials from the Ministry of Social Affairs and Health (n=7), conducted in 2021. The collected interview data was analysed using qualitative content analysis.
Patient organisations have welcomed the opportunities for participation. However, challenges have been encountered in the preparation of submissions, as there is limited patient experience with new medicines and few resources for preparing submissions. Regarding submissions to the Pharmaceuticals Pricing Board, a difficulty is that patient organisations must base their input on incomplete information as the details of price and reimbursement applications are not public. From the perspective of authorities, patient organisations' statements do not always address the relevant issues. According to this study, small staff resources are also a challenge in government agencies, hindering the development of participatory models and communication.
Dialogue, training, and the development of collaboration models are needed to ensure that the benefits of the submission process align with the intended goals.
