A Survey of Self-Perceived Knowledge and Knowledge Gaps of Medicines Research and Development Among Finnish General Public

Background: This study explored self-reported knowledge and willingness to learn more about medicines research, development and health technology assessment among Finnish general public. It also aimed to dene possible knowledge gaps and needs for public education regarding medicines research, development as well as health technology assessment. This questionnaire was originally developed as a part of the Needs Assessment Work Package of the European Patients’ Academy on Therapeutic Innovation (EUPATI) Project. The questionnaire was translated from English to Finnish and 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 was analyzed by using the freely available R program. 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 chi-squared tests. 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%). Those who had participated in a clinical trial had better knowledge and were signicantly more interested in learning more about several aspects of medicines research, development and health technology assessment. 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 recognized 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.

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%). Those who had participated in a clinical trial had better knowledge and were signi cantly more interested in learning more about several aspects of medicines research, development and health technology assessment. 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 recognized 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.

Trial registration
Not applicable Background Participation of patients and the general public in medicines research and development (R&D) and health technology assessment (HTA) can produce a wide range of bene ts. For example, by helping the researchers to understand the needs and priorities of the patients, it yields more relevant outcome measures and better treatment adherence and may also increase both public trust and interest towards medicines R&D (1-6).
As authorities, research groups and research funders are increasingly understanding the importance of patient and public involvement (PPI), it is gradually becoming an integral part of both medicines R&D and HTA processes (2,(7)(8)(9)(10). So far in Finland the public participation into medicines R&D and HTA has been rather minimal and only recently, academic research groups and national HTA bodies such as the Pharmaceuticals Pricing Board and Council for Choices in Health Care in Finland have started to open some of their processes for PPI (10)(11)(12)(13). However, the implementation of PPI in medicines R&D and HTA requires that the public has su cient knowledge of its concepts, methods, bene ts and rationale as well as its challenges. The aim of this research was to study the self-reported knowledge of the Finnish public on both medicines R&D and HTA and to de ne the possible knowledge gaps and needs for public education.
This survey was rst conducted in six European countries as a part of the Needs Assessment Work Package of the European Patients' Academy on Therapeutic Innovation (EUPATI) Project and its results were published in 2015 (14).
The survey was translated from English to Finnish and replicated in Finland in 2019.

Questionnaire
The original survey questionnaire was translated from English into Finnish by using the back-translation method and piloted with four Finnish speaking volunteers before conducting the survey in January 2019 (14). Participants were invited to answer this survey using a quota sampling approach, with quotas being set based on national census data on age, education and geographic region. Overall internet-penetration is fairly high in Finland (97 %). Therefore, using a panel gives a good chance to reach a sound representative sample of the target group.

Statistical analyses
The statistical analyses and data visualisation were performed on R version 3.6.0 (15). The relationships between the demographic characteristics (age, gender, education, participation in a clinical trial) of respondents and knowledge or interest in medical research were determined using Pearson's chi-squared tests. Statistically signi cant responses were determined by logistic regression. The distribution of the responses was visualised using ggplot2 version 3.3.0 (16). The data and the analysis code are available at https://github.com/manutamminen/knowledge_and_knowledge_gaps_of_medicines_research_among_ nnish_public.

Demographic factors
Altogether 503 respondents (age 16-64) completed the survey. Their demographic information is presented in Table 1.

Current knowledge of medicines R&D and HTA
Nearly 90 % of the respondents reported no or poor knowledge of medicines R&D in general. There were no signi cant differences between genders, age groups or education level, even though the self-reported knowledge of medicines R&D in general appeared to decrease by respondents age (Table 2). Respondents who had participated in a clinical trial reported signi cantly better knowledge (25 % reported having good or very good knowledge) than those who had not been involved in clinical trials (Table 2).
For the respondents, the most familiar topics in medicines R&D were medicines safety (good or very good knowledge 13 %), medicines development (11 %) and predictive medicine (11 %).
Regarding HTA, pharmacoeconomics and medicines regulation, only 8 % of the respondents reported good or very good knowledge (Figure 1). Good or very good knowledge regarding patients' roles and responsibilities in medicines R&D was even lower being 7 %.
Willingness to learn more Respondents were most interested in learning more about predictive and personalised medicine (47%), and least interested in medicines regulation (30 %), pharmacoeconomics (31 %) and HTA (35 %). Females were signi cantly more interested in learning more about medicines safety, predictive and personalised medicine, HTA, and regulation than males (p<0.05; logistic regression).
Respondents who had previously been involved in a clinical trial reported signi cantly better knowledge (p<0.05; logistic regression) in most areas of medicines R&D and HTA and were more interested in learning more about pharmacoeconomics and medicines regulation than other respondents (Figure 1).

Sources of information
Most respondents (75%) reported using websites to nd out information about medicines R&D and HTA, and 58 % reported doctors and other health care professionals to be their main source of information. Nearly a third of the respondents listed TV programs and newspapers as one source of information.
A majority, 70 % of the respondents wished to receive information about medical issues from a doctor or other health care professional, and 44 % from authorities. The least popular sources of information were friends or relatives (12 %), public-private partnerships (18 %) and pharmaceutical companies (19 %).

Discussion
According to our results, Finns estimate their knowledge on medicines R&D lower than British, French, German, Italian and Polish respondents (14). This is rather surprising as traditionally Finns have expressed strong interest towards science and research (17,18,19) and as health literacy is also a part of the national school curricula in Finland (20).
On the other hand, so far improvement of health literacy in general has not been included into national policy programs in Finland, although this may be partly due to differences in terms and concepts (21).
As an earlier involvement in clinical research increased patients self-reported knowledge and willingness to learn more about certain aspects of medicines R&D and HTA, our results imply that participation into a clinical research has been an educating and perhaps also an empowering experience for the participants (14).

Respondents of this study were most interested to learn about personalised and preventive medicine -contents essential in both Finnish Health Sector Growth Strategy for Research and Innovation Activities and in Finland's
Genome Strategy (22,23). As the Finnish Government has recently decided to support the Health Sector Growth Strategy in 2021-2022 with an additional funding (24), these topics have also been discussed in the mainstream media, perhaps partly explaining the public interest towards them. Currently Finland is implementing several publicprivate research projects on personalised and predictive medicine, such as FinnGen, which aims at improving human health through genetic research and iCAN Digital Precision Cancer Medicine Flagship, which integrates precision medicine and digital health data for development of personalised cancer treatments (25,26). Despite this, the selfreported knowledge regarding preventive medicine and genomics are rather low among Finnish public (27) and hence the importance of increasing the capacity of healthcare professionals to apply genome-based information as well as the empowerment of the public in improving their own health by effective use of genomic information is being emphasized for example in Finland's current Genome Strategy (23).
Pharmacoeconomics and HTA were the least interesting topics for respondents in this survey. One explanation for this might be that the Finnish HTA system is extremely fragmented and there is an ongoing discussion and several recommendations to simplify the system (28, 29). The Finnish Medicines Agency Fimea has published a recommendation to integrate patient perspectives into HTA process of pharmaceuticals (7,30). However, this plan has not been fully realized yet. Currently patient organisations and the general public can only leave their comments on recommendation drafts prepared by the Council for Choices in Health Care, and provide some input for the Pharmaceuticals Pricing Board when they are assessing reimbursement statuses and wholesale prices of medicinal products (11,12).

Preferred sources of information
In Finland, the public trust in health care services has traditionally been strong (31,32) and our ndings also indicate Finns to prefer health care professionals and authorities as the main source for health-related information. To maintain this, the knowledge-level of health care professionals needs to be kept up-to-date by organizing continuous education for them and also by allocating time and other resources of health care settings so that these complex topics can be carefully explained and discussed with patients and their caregivers (23,33,34).

Limitations of the study
Generalization of these results should be done with caution as the results are based on self-reported data, which might be subjected to biases such as misunderstanding of the questions asked and biases in one's memory.

Conclusions
This study indicated a need for medicines R&D and HTA related health literacy programs targeted for the Finnish general public. These programs could not only improve the level of public knowledge on medicines R&D and HTA, but also empower and increase the public interest to be involved in these processes in the future, as a potential consequence of critical health literacy (35). Just recently some advancements have been made to better inform the Finnish general public on medicines R&D and HTA as Finnish biobanks have added public information of their research and services on their websites and started to organize educational events targeting the general public (36,37). Also, the Ministry of Social Affairs and Health has opened informative websites such as websites for the national Genome and Neuro Centers (38, 39) and the Finnish Medicines Agency Fimea set up a Patient Advisory Board which started to operate on spring 2020 (40). In addition, a national platform of European Patients' Academy on Therapeutic Innovation (EUPATI) was launched in Finland in 2018 providing patients and patient organizations with education on medicines R&D as well as HTA (41). These are important advances for educating the public on medicines use. However, if authorities, companies and researchers genuinely want to involve patients and the public in medicines R&D and integrate their contribution also in the HTA processes, there is a need to develop clear guidelines for public participation as well as increase public education on these issues. Transparent and public discussion of health care decision making and priority setting is also urgently needed (42)  The research was carried out following the ethical principles of research with human participants of the Finnish National Board on Research Integrity TENK (43). The research was conducted respecting the dignity and autonomy of human research participants, and the research complies with the guidelines on responsible conduct of research (RCR) drawn up by TENK (44). The participants were informed about the study by an electronic letter of consent, which they had to accept before entering the online survey. The researchers had no access to any personal data of the participants.

Consent for publication
Not applicable Availability of data and materials The dataset(s) supporting the conclusions of this article is available in the GitHub repository: https://github.com/manutamminen/knowledge_and_knowledge_gaps_of_medicines_research_among_ nnish_public.

Competing interests
Tran Minh, Lahti, Tamminen-Sirkiä and Majumder are members of the EUPATI Finland executive committee.