A real democratization of healthcare must include how to use research data by a supported understanding of findings from clinical trials.
Democratization in healthcare is more than just a buzz word; it is important and is coming to live right now. Digital technology increases access to healthcare and at the same time support self-care. Patients are playing a much more active role in their healthcare decisions, and never in the history have patients have access to so much (of their) information.
Moderne Healthcare builds upon Evidence Based Medicine, and clinical trials are the cornerstone of Evidence Based Medicine. Treatment options, diagnostic procedures and -strategies, recommendations, and guidelines, are all based on findings from clinical trials. There is, however, a problem here. Research has documented that even though Evidence Based Medicine is the cornerstone in modern healthcare, is the greatest challenge getting Evidence Based Medicine discoveries implemented. It has been documented that there is a lack of Evidence Based Medicine in much clinical care, but healthcare professionals on the other hand often find too much available information claiming to be Evidence-Based Medicine as a problem. Main barriers for using available medical research is
- Keeping up with the medical literature is increasingly difficult. At the current pace, over 1.2 million citations will be added to PubMed this year, which breaks down to more than 130 per hour, day and night
- Lack of skills to evaluate and find the relevant information
- Information often contradictory
- Patient-related factors
Critically evaluating medical papers is difficult for healthcare professionals having a relevant educational background, no wonder it is difficult for patients to find information of relevance to them. Non-medical persons can also search the internet for information from clinical trials but must realize that particular skills and training are needed to be able to both read, understand and evaluate medical science. The primary sources are therefore non-scientific information on the internet like on Facebook and blogs, where you can find real valuable information, but it can be hard to find in “the noise”. Add to that information presented in the news most often as a “copy-paste” from press releases provided by pharmaceutical companies and academic institutions.
British Medical Journal, BMJ, one of the most prestigious medical journals, have started including patients in the review process of papers submitted to BMJ by researchers. This to increase not just patients involvement in the process of selecting papers to be published, but also to improve selection based on articles of relevance to patients.
Healthcare decisions and treatments are not based on “one size fits all” model, but take guidance from results from clinical trials. At the point of care the health care professional brings this information, but as mentioned above, that is not without problems and limitations. The patient brings his or her values and preferences, but increasingly often also some information captured on the internet from both relevant and more doubtful sources, together with highly individual data from home monitoring and wearables. This is where plans and decisions are made and evaluated. For this process to be fruitful it must be based on data and information most relevant to the patient, this includes findings from proper conducted clinical trials of persons like the individual patient, and with clinically relevant outcomes.
The genuine democratization of healthcare must not be limited to access to own data and support of self-care, but also need to include access, help, and support to find individually meaningful data from clinical trials.