Editorial Medicalfacts / Janine Budding December 16, 2023 – 8:36 PM
Research by TNO shows that patients are willing to participate in new ways of scientific research by sharing their knowledge and skills, as well as health data regarding their disease. It became clear that patients are open to home measurements and new forms of communication with researchers, such as telephone consultations and video calls, as conditions for such research. 1,074 people participated in TNO’s research.
Patients are not directly involved in scientific research
Andre Boorsma, senior digital health researcher at TNO: “Patients are only rarely directly involved in devising and carrying out scientific research. The patients often have interest, knowledge and relevant data.” TNO investigated patients’ views on new research methods. Various aspects were examined, such as the use of health apps and the collection of data for research. Involvement in devising and setting up scientific research was also examined. Finally, attitudes towards a patient and data research group were examined; a new way of direct involvement of patients in scientific research.
Majority positive about active involvement
The survey showed that 62% of the 1074 participants are positive about active involvement in scientific research. Only 4% were unwilling to do so. An important condition for carrying out patient-driven health research is the use of health applications and other means of collecting data. Of the 971 participants in the questionnaire, 64% indicated that they use health apps, 32% of participants indicated that they do not use them and 3% have stopped using the apps after previous use.
Patient and data research group
A group of patients with a similar condition who digitally collect health data during daily life is a patient and data research group. The data from that group can then be used for scientific research. The data is collected by the participants occasionally completing a questionnaire or by using health apps and wearables. Such a method of data sharing for scientific purposes was positively received by 69% of respondents. The participants see transparency, information, safety, expertise and trust as the most important values in such a group. The most important reasons for participating are contact with fellow sufferers and solidarity.
Patient’s self-collected data is important
“In addition to medical data stored in hospital and GP files, the data collected by the patient himself is also of great importance for research,” says Boorsma. “It is therefore interesting to put the patient more at the center of scientific research. It is precisely the data collected by the patient himself that gives additional meaning to the medical data. The patient has access and control over this data and can make it available for research under the right conditions, for example the security of data storage and clarity about what data is used for. The combination of medical data and health data collected by the patient themselves can accelerate the development of medicines and new treatments. It offers perspective that our research shows that a majority of the patients surveyed are open to more involvement in scientific research.”
Research design
TNO’s research consisted of a questionnaire and focus group discussions. The questionnaire was completed in 2022 by 1074 members of the Dutch Patient Federation. The questionnaire addressed the most important aspects that contribute to greater patient involvement in scientific research. Subsequently, 32 participants participated in online (video calling) or physical focus group discussions where the research questions could be discussed in more depth.
Source: TNO
Editorial Medicalfacts / Janine Budding
I studied physiotherapy and health care business administration. I am also a registered independent client supporter and informal care broker. I have a lot of experience in various positions in healthcare, the social domain and the medical and pharmaceutical industries, nationally and internationally. And I have broad medical knowledge of most specialties in healthcare. And the healthcare laws from which healthcare is regulated and financed. I attend most of the leading medical conferences in Europe and America every year to keep my knowledge up to date and to keep up with the latest developments and innovations. I am currently doing a Masters in applied psychology.
My messages on this weblog do not reflect the strategy, policy or direction of an employer, nor are they work by or for a client or employer.
2023-12-16 19:41:54
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