21st century healthcare: involving patients as experts

(Originally published by EuroStemCell, Feb 11, 2016)

‘Let me just do a quick Google search of that’ is probably an increasingly common thought of medical patients in the 21st century. As accessibility to healthcare
information and self-management of health is growing, so is the importance of involving patients and the public in healthcare. Patients have valuable insights to offer healthcare and biomedical research and many want to actively contribute to research.

Researchers at the European Patients’ Academy on Therapeutic Innovation Project (EUPATI), led by Suzanne Parsons, surveyed people from the six European countries with the most widely spoken mother tongues, Great Britain, France, Spain, Italy, Poland, and Germany.

Their goal was two-fold, to assess the knowledge and to gauge the interest of the publics in the research and development of new medicines. Their aim down the line is to help the publics communicate with health professionals, help them understand decisions about medicine, and potentially get involved with the development of new medicines The findings appeared in the January 2015issue of BMJ Open.

epSos.de, Flickr

Previous research showed that those in the pharmaceutical industry see the need to make the development of new medicines more focused around patients. This is especially important for the success of the sector as medicines are becoming increasingly complex and costly. Furthering public understanding of how medicines are developed can also be a road to heightened trust in the pharmaceutical industry.

The EUPATI study (same link as BMJ Open link above) found public interest in the research and development of new medicines to be greater than their knowledge about the process. Notably 75% of those surveyed had no or less than good knowledge of the process, with at most 30% reporting good knowledge in specific areas within the development of new medicines, including pharmacogenomics, clinical trials, predictive medicine and personalized medicine. Topics of which participants had the greatest knowledge (medicines safety and clinical trials) may be indicative of the extent to which these are discussed in the media.  Participants were most interested in learning about medicines safety, predictive medicine, and personalized medicine, and least interested in economics.

The researchers also found that more men than woman reported that they held good knowledge about research and development into new medicines. Older people, women and those with good current knowledge were most interested in learning more. Overall, 61% of participants were keen on learning more about medicines and treatment development.

Surveys by nature contain self-reported knowledge, and while this may be a confounding factor that contributes to the low reported levels of knowledge, it may also be an indication of a lack of high quality information available to the public. These findinKB35, Flickrgs can provide impetus for stimulating public interest in the research and development of new medicines both for the sake of patients, and the pharmaceutical industry.

With this in mind, EUPATI has launched a new online ‘Toolbox on Medicines Research and Development.’ As Jan Geissler, Director of the European Patients’ Academy said, “The toolbox is a comprehensive, self-explanatory, educational resource that has been built so that learnings on medicines research and development can be developed and shared by patient advocates.”

The toolbox also includes a ‘Patient Expert Training course’ to support patients with information and knowledge. This toolbox is an important piece of the puzzle in helping patients and advocates understand how medicines are developed and how they can be involved in this process.

Further reading:


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