Re: Patients’ roles and rights in research: Patient-friendly access to information is key!
You are a patient and you want to recover. But how can you manage that? And what can you do to help others with your experience?
As a patient you need at least patient-friendly access to information about clinical research.
So you can inform yourself about your health and your opportunities to recover. You need that to realize what is the best for you and it helps you to make decisions about your future. And your experience may be of value for others.
The editorial provides convincing evidence and argumentation that more and more patients want to and need to be an equal partner in health issues, about their own situation and about getting better results from clinical research.
Our Dutch health care, however, is not yet equipped to give the patients that position and role. Therefore the patients need help from others, for instance from the Dutch Clinical Research Foundation (DCRF)..The DCRF is the national forum for creating a better clinical trial climate and so it is the meeting point of the involved parties e.g. hospitals, universities, research institutions, pharmaceutical industrie, Contract Research Organisation’s, patients, regulators and government. By discussing to overcome clinical trial hurdles the parties want to inspire each other in making better results. In the recent past the main concern was to be more efficient in the research process. Now another topic came along; patient involvement. Because health care is there for the patient and not the other way round, the DCRF wants to ensure that the patient gets a good position in decision-making in clinical trials. For instance in recruitment it is well known that it is hard to include enough patients in time. DCRF partners want to change that inefficient part of the research. And patient involvement now is seen as a big part of the change to success.
To make that success happen patients must be well informed about the medical research: content and process. Otherwise their voices will be not recognized. One of the DCRF working groups, dealing with Recruitment, has taken the initiative to investigate the current situation with regard to the access for patients to available research information, and to determine the actual needs of patients with respect to that information. The results of these investigations (2017) reveal that patients need one single entry point to look up the information, they need (compact) understandable texts in their own language, they need the information available during the time from diagnose to treatment, information about diseases, researchers, location of research. They need it online and on paper. And they want it to be handed over by their physician and read it again (online) themselves.
At the moment this is not available, so it must be organized.
Based on the outcome of this field study, the report provides a strong recommendation to involve all parties in research into patient participation in all activities for collecting information, for search terms to find them again, for making abstracts in lay language, for distribution the information. The report mentioned explicitly that the regular parties have to look for help by experienced patients to help in this process. Those patients are around in patient organisations and they are very willing to do this job together with researchers, physicians and regulators. May be special education in patient participation makes them more convenient.
It is clear that this is a win-win concept: the patients learn about the research and about being an equal partner; the research parties learn about the most important part of their research, namely the wishes of their end users. These activities will take a lot of effort of all parties involved because now they are not used to listen to each other and making decisions as equals. There for good accompaniment is necessary.
The whole process will take a long time before all information is available for patients in for them friendly way, quickly to find and easy to understand. But it is worthwhile for every body: better results of research, better care for patients.
DCRF has the ambition to organize this in a proper way.
By the time the European Clinical Trial Regulation will start in 2019 in The Netherlands we won’t know any better.
Veronica Van Nederveen
Dutch Clinical Research Foundation (DCRF)
Competing interests: No competing interests