Enabling joint discussion and good interaction are important lessons learned for the period 2022-2023

Office workers in a meeting.
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The COVID-19 pandemic affected the first term of Fimea's patient advisory board in 2020-2021 in many ways. The themes of the meetings often covered Fimea's tasks from the perspective of pandemic management. For example, vaccine development and various protective equipment emerged as themes. Only one of the four meetings originally planned could be implemented using a hybrid model. Sharing reliable information was considered important, even though remote meetings challenged the ability to generate joint discussion and interaction.

Dialogue increases knowledge and understanding between the parties

In addition to presentations by Fimea's experts, a representative of the patient organisation was also heard at the last meeting of the term 2020-2021. Olga Haapa-aho, an expert in social and health security, IBD ja muut suolistosairaudet ry (IBD and other intestinal diseases association), presented preliminary research results on the study ‘Potilaiden näkemykset biologisista lääkkeistä ja niiden ei-lääketieteellisestä vaihdosta’ (‘Patient views on biological medicines and their non-medical exchange’) carried out by Yliopiston Apteekki pharmacy and the University of Helsinki. The electronic survey had been carried out by means of an electronic survey newsletter for the customers of Yliopiston Apteekki pharmacy in January 2021.

After the presentation, time was reserved for a joint discussion in which representatives of other patient organisations also had the opportunity to express the experiences and views of the members of their organisation on the same topic.

‘The discussion was lively. I was left with the feeling that the views of the representatives of patient organisations about the everyday life of patients and medicine users were welcome’, says Olga Haapa-aho.

The joint discussion provided Fimea's experts with important background information, which they can take forward, for example, in the working groups of the Ministry of Social Affairs and Health. Under the leadership of the Ministry of Social Affairs and Health, Finland is discussing various options for managing the costs of biological medicines that have lost a patent used in outpatient health care.

Meetings provide opportunities to ask questions

One of Fimea's and patient organisations' goals is to act as reliable sources of information for patients and users of medicines. On the other hand, the contents and starting points of the work differ.

‘While Fimea dives deeply into detail, patient organisations engage in more social discussion from the perspective of the patient's everyday life and needs’, says Päivi Opari, Senior Specialist at the Finnish Federation for Social Affairs and Health SOSTE.

Feedback received at Fimea's meetings reveals that the challenge is to find a suitable common level of information sharing; not to go into too much detail, but to provide sufficient information. The feedback highlights the opportunity offered by the meetings to pose questions to experts. Plenty of accurate and reliable information has been made available. In addition, Fimea's ready-made articles on the topics discussed make it easier for organisations to inform and communicate about the content of the meetings to their own members.

The first meeting of the patient advisory board during the term 2022‒2023 in March

For the period 2022-2023, all 17 disability and patient organisations that applied to join were selected. Patient and disability organisations are of various sizes and include organisations representing both rare and widespread diseases.

The patient advisory board will convene for the first time in March 2022. The advisory board convenes twice a year. The meeting programmes and materials will be updated to the Fimea website to make them available to all.

Further information on the materials of Fimea’s patient advisory board for the period 2020-2021 and the members of the new period 2022-2023