Citizen Science: turning patients into researchers
Almost 8 million people in the Netherlands suffer from a chronic condition. Many have physical symptoms that cannot be addressed with common medical treatment, which has prompted them to find their own cures. With financial backing from the Association of Health Funds (SGF) and the Netherlands Organisation for Scientific Research (NWO) top sector Life Sciences & Health, an interdisciplinary research team will harness the impressive resourcefulness of these patients to generate widely accessible knowledge and therapies.
The interdisciplinary team will consist of psychologists, health scientists, statisticians and immunologists and operate as part of the MyOwnResearch consortium, under which umbrella it will collaborate with health care institutions, businesses and patient organisations.
Chronic conditions and self-care
Patients who suffer from a chronic condition often also suffer from co-morbid conditions that greatly affect their daily lives, such as chronic fatigue, but that cannot be addressed effectively with common medical care. They show impressive resourcefulness in attempting to find the causes of and cures for their symptoms on their own.
The knowledge that these patients gain about which interventions work and which do not is of great value to others. Unfortunately, this knowledge is currently often lost, as there is as yet no suitable method for recording their personal findings accurately and in a systematic fashion for the benefit of other people.
Turning patients into researchers
The MyOwnResearch consortium focuses on patients with a variety of chronic conditions who all suffer from co-morbid intestinal complaints and chronic fatigue. There is an increasing awareness that these two complaints are closely related. The patients who take part in the project will monitor themselves as they consume a variety of food supplements, such as probiotics, in an attempt to tackle these conditions. They will record their findings in a systematic fashion, allowing researchers to look for commonalities at the group level.
MyOwnResearch design and outcomes
The research team will set up an infrastructure for patients, GPs and researchers to record and monitor data. As a next step, mathematicians will develop models to process these data and assess which interventions work for which patients and which factors influence their sense of well-being. Following the validation of these models, the team will develop a method and application, which will be made available to health care professionals, patients, GPs and businesses that develop treatments for the aforementioned conditions.
What is special about this research?
- the gathering of data on a large scale within a shorter period of time and at a much earlier stage than with common research methods;
- the adequate monitoring of self-care and its translation into knowledge development and timely outcomes;
- the more rapid assessment of effective therapies and products, allowing a more rapid adoption by professional practice;
- a more rapid improvement of the patients' quality of life.
The role of the Faculty of Social and Behavioural Sciences
Working in multidisciplinary teams is a hallmark of modern health care research. One of the reasons behind this is the growing emphasis on personalised health care and quality of life. When it comes to these themes, social and behavioural scientists possess valuable expertise as a result of their knowledge of behaviour and how it is shaped by biology and the environment.
Scientists of the University of Amsterdam's Faculty of Social and Behavioural Sciences (FMG) have joined MyOwnResearch to help set up a national infrastructure, develop methods to turn patients into researchers and analyse their data. At the same time, the FMG is hosting an independent replication and validation study to assess static predictions (i.e. which interventions work for which patients).
The FMG collaborates closely with the consortium's coordinators, Anje te Velde of the Amsterdam UMC (the result of the merger between the AMC and the VUmc) and Gaston Remmers of the patient organisation My Data, Our Health (Mijn Data Onze Gezondheid – MD|OG). Dr Jos Bosch (Psychology, UvA) is the Principal Investigator for one of the three constituent projects of the consortium.
Other partners in this public-private consortium are Utrecht University, Maastricht University, Winclove Probiotics B.V., Springfield Nutraceuticals, the Microbiome Centre, Biovis Diagnostik, Nutricia Research and the Holland Health Data Cooperation.
The research is funded as part of the public-private partnership programme Better Health (BeterGezond), made possible by the SGF and the top sector Life Sciences & Health. Additional funding has been made available by businesses and eight different health funds, bringing the total budget of the project to €2.6 million.