Can scientific evidence be valid if irrelevant to patients?

Imagine a situation where researchers publish their study in a renowned scientific medical journal. As a result, in many countries, the study findings get adopted in medical guidelines and subsequently enter practice rooms and become part of interaction with patients. However, soon after the publication, patients start questioning the validity and the relevance of the study findings based on their own experiences. How do you think the researchers responded? Share study details including data to sort out all questions raised? Or hide behind the peer-review policy of the journal and disqualify critics as being sociopaths?

If you think the above is history or fiction, then this may be your wake-up call. In August 2016, a judge has rejected a university’s attempt to prevent release of data from the controversial PACE trial. Patients have long been critical about the PACE trial and with the increasing academic support, it was only just recently that the PACE researchers’ failure to respond to criticism seems to come to a hold. ¹ Immediately after the decision by the judge, the director of Sense About Science USA tweeted “PACE trial is a fault line between the way we did medicine (secretive, clubbable) and the way we should do medicine (transparent, shared).” ² We argue that, based on the PACE trial saga, this statement holds as much for how we do and should do research as it does for medicine.

There are at least two strategies for scientific journals to improve this situation. First, editors and reviewers of journals should make more efforts, and receive all information necessary to do so, to assess the relevance, reliability and validity of study methods in a more comprehensive and transparent way. For example, giving randomized controlled trial data by default, the highest hierarchy when appraising evidence in medicine to support decision making is fundamentally flawed, as these hierarchies embed untenable philosophical assumptions. Indeed, a recent study showed that such hierarchies are a poor basis for the application of evidence in clinical practice. ³ Beyond a study’s design, other methods (e.g. selection criteria, sample size, data collection and data analysis) collectively define the methodologic quality of a study and should be assessed as whole. Furthermore, and in contrast to what many policy makers and research funders think, experimental designs are not the optimal design of choice to address all research questions. This holds in particular for multi-component interventions, such as care coordination, where multiple changes occur in a non-linear fashion often in a complex, social system. Second, journals should explicitly ask authors to describe the relevance of their study findings for patients. If already part of a journal’s publication policy, this is often left to academics themselves. From autumn 2016 onwards, the International Journal of Care Coordination will request from authors to insert a separate paragraph about the relevance of study findings from a patient’s perspective. This necessitates authors to work with patients in order to get their publication accepted. The key argument here is that when research to inform evidence-based medicine is not relevant to patients, then it should not have been executed in the first place. The journal’s call for a patient editor fits in the strategy to give more room to the patient’s voice in coordination of care research.

This double issue of the International Journal of Care Coordination offers a rich and interesting pallet of studies, some of which explicitly include the patient’s perspective where others discuss the need for doing so. Nolte et al. ⁴ have performed a synthesis of experiences with implementing integrated care in Denmark, Germany and the Netherlands. Skrove et al. ⁵ address the question to what extent integrated care pathways appear to be a suitable strategy for care coordination from a primary care point of view in one of the Norwegian counties. Braet et al. ⁶ evaluated variations in the quality of transitions from the hospital to home across groups of patients and hospitals in Flanders, Belgium. The next two papers take a more conceptual perspective on care coordination and its evaluation. Chamberlain et al. ⁷ reflect on the utility of a care coordination framework, developed from a range of clinical settings, for assessing service coordination for Aboriginal families in Australia. Busetto et al. ⁸ report on the development of a model for the comprehensive evaluation of integrated care interventions that provides insights into when, why, and how successful outcomes can be achieved. Finally, Picas and Sevilla ⁹ share their impressions about the International Conference on Integrated Care that took place earlier this year in Barcelona.