According to the Institute of Medicine, there is an average lag of 17 years between the generation of evidence through randomized controlled trials and its subsequent implementation into the health system.
Today, a shift toward patient-centred care means the health system is evolving not just based on evidence, but also in reflection of patient and caregiver values and preferences.
Funding bodies such as the Canadian Institutes of Health Research (CIHR) have helped to propel this shift forward by encouraging or requiring patient or caregiver partnerships in many major research funding competitions. As a result, across the country, patients and caregivers are becoming more involved in research, including co-leading research programs and co-delivering research outputs across medical disciplines.
However, while researchers are doing a much better job at meaningfully including members of the public in research, there is still justified criticism that the health system has been slow to adopt the evidence emerging from these partnerships.
The question that remains then is: how do we take the next step to ensure that our efforts to involve the public in health research have the best opportunity to impact patient care and outcomes?
How do we close that 17 year gap to deliver better evidence-based care?
Our research team, led by Tom Stelfox, a professor and intensive care physician in the Department of Critical Care Medicine at the University of Calgary, works with patients and families to promote the adoption and integration of evidenced-based practices into the health system. From our experience, there are three key ways research teams can help ensure that public engagement in health research has the best opportunity to impact care delivery and outcomes:
Map the current state of public involvement in your area of interest before you begin
We regularly begins new projects by mapping the realities of health care practices at the ground level.
For example, we currently have multiple ongoing projects focused on the removal of low-value health care practices, like liberal blood transfusion in intensive care. One of the first steps in this program has been to develop a process outlining the current state of public involvement in decision-making in Canadian intensive care units.
That includes asking questions such as: have patients and families previously been involved in de-adoption decision-making in this unit? What did this look like? What are the drivers of non-involvement of patients or caregivers? What are the strategies for improvement? And finally, what are the potential barriers to realizing these strategies?
This type of information paints a vivid picture of the current state of engagement in our area of focus, and will be used to develop targeted interventions to bolster meaningful public engagement in decision-making at the unit level.
Include public members as core members of the research team and grant them decision-making power
Whenever possible, our research team partners with established medical leadership and the public from the very beginning of research projects. For us, this means including decision makers and the public on research steering committees, and providing equivalent opportunities for all to shape the direction of our research.
For example, we include patient and family members on our executive steering committees and do not make decisions about research direction unless we have at least one representative from each stakeholder group present.
Alberta Health Services’ Strategic Clinical Networks are excellent partners for this approach to research because they bring together researchers, clinicians, operational leaders, patient and family members to develop strategies to improve the delivery of health care on a provincial landscape.
Use research as a platform for the development of sustainable systems of control that support public involvement in health care
While health care culture (or any culture for that matter) can be slow to change, we’ve found that when policy is in place to support public involvement in research and in health care practice, it can go a long way towards affecting the cultural climate.
The theory of “learning by doing” says that putting ideas into practice is an effective experimental tool for obtaining results and building perspective. That holds true here. Crafting public involvement as a requirement of health care decision making may help to shift expectations so that the contributions of the public become both anticipated and highly valued.
We’ve had remarkable success working with public members and operational leaders to develop and implement policies that support sustained change after our research projects are completed. For example, we recently developed and implemented a novel ICU-to-ward transfer tool, an output that was the product of months of stakeholder engagement and priority setting consultations following a cross-national study of transfers of care. Building these partnerships early – as early as the grant application stage – and maintaining them throughout the duration of this project was essential to its success.
While our methods are continuously evolving, the take away message remains the same: researchers and clinical leaders must commit to engaging the public in both research and clinical practice.
The principles behind the slogan “Nothing About Us Without Us,” which represents the idea that no policy should be decided without the full participation of members of the groups impacted by that policy, are ones that we can turn to for guidance in our efforts.
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