“Can you share any stories of patient engagement in practice?”. This is the most common question our team is asked by researchers looking to engage patients in their work.

Why is it then that so few researchers feel confident in moving forward with a patient engagement plan in their research?

Launched in 2011, the Canadian government’s Strategy for Patient-Oriented Research (SPOR) aims to enable and promote patient involvement in research. In our work with the Ontario SPOR Support Unit (OSSU), we focus on supporting methodological development and best practices in patient-oriented research.

Now, seven years into SPOR and with much development in patient engagement nationally and internationally, it is surprising that this question is asked as often as it is. We have reached a stage where there is ample guidance and foundational knowledge for researchers to follow when they are looking to engage with patients. Why is it then that so few researchers feel confident in moving forward with a patient engagement plan in their research?

A lack of reporting on patient engagement

We posit that a major part of the answer lies in the reporting of patient engagement practices in published research. In a systematic review published today in Research Involvement and Engagement, we found that far less than an estimated 1% (~0.006%) of published trials provide critical information about how patients were engaged in the research.

This extremely low prevalence is particularly unexpected as patient engagement in research is becoming more popularized by many means, including the encouragement from funding bodies to include patients as partners on grant proposals. We assume that the actual number of trials engaging patients is likely much higher, but the entire landscape was not captured in our searches and screening due to poor reporting.

Of the trials that do report, the information surrounding intentions, motives, impacts, and methods is often limited and vague. There is an obvious disconnect between the push to engage patients in meaningful roles on the research team and thorough reporting of this practice.

There is an obvious disconnect between the push to engage patients in meaningful roles on the research team and thorough reporting of this practice.

Patient engagement is an important piece of research—but it is not the research itself. The focus of scripting a manuscript is typically to present a question and explain the steps taken to explore it further. Within the traditional IMRaD (Introduction, Method, Results, and Discussion) format of many manuscripts, patient engagement does not have its own section. As such, patient engagement activities are often omitted from the manuscript completely or reported on very poorly.

Poor reporting can be unhelpful because giving vague information can leave the reader with more questions than they started with. Researchers therefore continue to ask, “can you share any stories of patient engagement in practice?”.

How can reporting be improved?

There is a need to improve reporting to advance the field of patient engagement. Other types of reporting guidelines have shown significant benefit. For example, the CONSORT Statement, which is a set of recommendations for reporting randomized trials, is endorsed widely in order to improve the quality of research used in healthcare decision-making.

By encouraging researchers to formally report on every aspect of their work, we can address the present gap in knowledge and understanding. Patient engagement is an area where research into best practices remains essential.

Fortunately, guidance does exist for reporting patient engagement. The Guidance for Reporting Involvement of Patients and Public (GRIPP) identifies important aspects of good reporting in patient and public involvement work. In addition to transparent reporting within the manuscript of a study, we also suggest that separate publications of any documents used to guide or facilitate the practice of patient engagement would be helpful. Such documents may include the patient engagement plan or protocol, a Terms of Reference, and a description of the patient role.

While it is not common practice to evaluate or narrate the responsibility of all members on a research team in such a formal way, we should encourage doing so with the patient’s role. We are still learning in this field, and importantly, we are still learning from each other.

The ultimate goal is to normalize the practice of patient engagement in research to a point where a patient’s role on the research team is as clearly defined as other members such as the statistician or investigator. It is therefore imperative that we, supporters of the patients’ voice in driving research, commit to reporting on our practices in a thoughtful, useful, and articulate manner.