Research priorities in family medicine

In his final contribution to our series on the ‘Research agenda for general practice and family medicine’, Paul van Royen concludes: ‘Worldwide, primary care not only is a priority for health care policy, but it needs to become a research priority as well’ (1). He advocates the integration of primary care research as part of primary healthcare provision. This requires the development and maintenance of a solid research infrastructure in primary health care.

At the medical schools of our universities, capacity building in family medicine research should be supported—starting in the undergraduate curriculum and being continued during vocational training—and advanced post-graduate research training options should become more available across Europe. Furthermore, maintaining observational databases in our practices and health centres, and gathering data from everyday care should become a normal activity. Thus, relevant data not only will be available for research purposes and health care policy—primary care epidemiology, the development of illness in the course of time, medical as well as functional and quality of life outcome measures—but also for the health care professionals themselves, who can use these data as tools to support practice management decisions and to improve quality of care. The shared responsibility and guidance of research by professionals and citizens (i.e. patients) is an inevitable and necessary consequence of the growing understanding of the important role of shared decision making and the need to integrate self-management of (empowered) patients with professional health care, especially in the management of chronic diseases.

In the ‘Research Agenda’ a four dimensional model of family medicine is proposed as an alternative for the original six domains that describe the discipline of general practice/family medicine: clinical aspects, person related aspects, community oriented aspects (including equity and diversity), and management aspects (2). The recently published ‘Summary’ of the ‘Research Agenda’ describes the focus for future primary care research by the key words ‘primary care clinical studies’, ‘generic interventions’, and ‘diversity’ (3).

Relevant topics for primary care clinical studies are common everyday complaints and illnesses, diagnostic strategies and reasoning (including simple decision rules and point-of-care diagnostic methods), long-term clinical development, intervention studies (of non-pharmaceutical interventions, comparisons of established treatments, diagnostic or therapeutic safety) assessing effectiveness and efficiency in everyday care.

With regard to chronic disease in elderly patients, multi-morbidity is a central issue, demanding for studies of generic interventions, using generic outcomes that take into account patient preferences, quality of life and social circumstances.

As for diversity: in changing societies—older, more chronic diseases, limited resources, individualized, more variation in cultural identities and religious backgrounds—comparative research among individuals or in populations with different cultural, social, or geographic contexts should be encouraged. Furthermore, differences in health care systems could be the topic of international collaborative studies. Current times offer many opportunities to test theoretical concepts and hypotheses in different circumstances.

In the commentaries on the ‘Research Agenda’, the methodology of research did not receive much attention. However, journal editors might keep the suggestions of the ‘Research Agenda’ in mind when deciding on acceptance of a paper (I quote freely):

Qualitative studies are important to approach complexity, to assess patient or doctor perspectives and preferences, to explore barriers and facilitators for desirable behaviour of patients, students or doctors, to explore what health outcomes are perceived as relevant by patients, and finally as a first step in the development of measurement instruments or interventions. In addition, observational quantitative studies can be very useful to approach a new research topic or context. Longitudinal studies are important to assess continuous, comprehensive care and sustainability of intervention effects. Prospective cohort studies or (nested) case control studies can be good options to assess risk, effects of implementation of care models or educational programmes. Finally, randomized controlled trials can provide high-level evidence on diagnostic strategies, therapeutic or other interventions if they are original, externally valid (with regard to selection effects and bias) and use adequate outcome measures. We should stop focusing solely on patient satisfaction, service uptake, or (surrogate) biomarkers. It is necessary to develop and validate more functional and generic outcome measures for use in GP/FM research and care. In intervention studies, the expected added value to “usual” primary care should be considered carefully. In particular when planning studies on lifestyle interventions or on quality of care improvements, existing evidence should be reviewed thoroughly to assess originality and external validity (2).

In this issue of The European Journal of General Practice, you will find many studies on generic aspects of our work—palliative care, geriatric care, paediatric care and health care for migrants—using a variety of research designs. I would like to highlight the interesting study by Livia Anquinet and co-workers from Belgium on continuous deep sedation in patients dying at home (4). Some results might be perceived as shocking, but Dick Willems, Professor of Medical Ethics, shares his reflections on this study with us (5).

I hope this issue of our journal will lead to reflection and debate on priorities in research, ethics and practice.