Braden O’Neill is a family doctor and Assistant Professor in the Department of Family and Community Medicine at the University of Toronto.
Peter Gill is a Clinician-Investigator in the Division of Paediatric Medicine at The Hospital for Sick Children and an Assistant Professor of Paediatrics at the University of Toronto
Braden and Peter are co-chairs of the EBMLive 2020 conference
Quickly now, from here to the next room. Keep moving. Drop of hand sanitizer, rub it in, make sure not to forget the thumbs. Knock and enter. Sit down. Breathe. Focus. With the door closed, it’s just you and the patient and their family. What’s said, what’s unsaid. History, physical, a few more clarifying questions, then a differential diagnosis. Investigations. Treatment. Follow up. Repeat 25 times.
Driving to the appointment, traffic getting worse all the time. Check-in at reception, then waiting. Nurse calls you in, checks blood pressure, which hurts more than they realize, you think. Then the clinician walks in. Computer takes too long to open; seems like so much attention is paid to the computer and less to the patient, these days. Blood work elsewhere; book a half day off work for that. “They’ll call you for the ultrasound” (who are “they”, anyway?); another half day off work. Why can’t this all be more streamlined, more efficient?
Clinicians and patients will likely see themselves in the scenarios above. Researchers, too, will be familiar with these perspectives and challenges, with many seeking to work to make things better. Patient and public involvement in research (PPI) has become an increasingly prevalent aspect of research projects. Funders such as the Canadian Institute of Health Research (CIHR) and the National Institutes of Health Research (NIHR) in the United Kingdom strongly promote patient involvement throughout the research process. In Canada, the national Strategy for Patient-Oriented Research, supported by CIHR, has a fundamental goal to support patients moving from being passive recipients of services to proactive partners who help shape health research and, as a result, health care. The goal is to support meaningful engagement, moving away from what has been described as a ‘hit and run’ approach towards mutual trust and support.
Patient engagement can occur throughout the research continuum, and there are great examples at all points. Identifying what questions should be researched in the first place is a key focus of the James Lind Alliance, an organization that supports ‘priority setting partnerships’ where patients, researchers, and clinicians come together to identify the most important research priorities in a given area. Examples of this include identifying priorities around inflammatory bowel disease, tinnitus, and digital technology in mental health care. Interestingly, when comparing research questions identified by these systematic priority setting partnerships compared with academic and commercial trials, the latter focus more on drugs and devices, whereas the former (developed by patients and clinicians and researchers together) prioritize education and service delivery.
Another area where patient involvement is frequently transformative is in selecting outcomes for studies. In the CLEAN MEDS randomized controlled trial where people were randomized to receive either free medication or the usual piecemeal medication coverage that is typical in Canadian society, patients were involved throughout the design and conduct of the study. One of the key things that would not have happened without patient involvement is the addition of an outcome, “ability to make ends meet”, that patients suggested was important to examine. The study showed that the intervention was effective for that outcome.
Good doctors [and clinicians] use both individual clinical expertise and the best available external evidence, and neither alone is enough. Without clinical expertise, practice risks becoming tyrannized by evidence, for even excellent external evidence may be inapplicable to or inappropriate for an individual patient.
These principles, set out by David Sackett and colleagues in 1993, remain as true today as ever. There are many problems with the evidence that is currently available to make decisions, such as a plethora of poorly conducted studies, many studies that show something doesn’t work not getting published, and the wrong questions simply being asked in the first place. These problems have been set out by many groups including those writing the EBM Manifesto.
The annual EBMLive conference has been at the forefront of how best to make evidence better through patient involvement for a decade. It is coming to North America for the first time ever, to be held in Toronto 6-8 July 2020. The conference includes a cross-cutting theme on patient involvement and collaboration. Abstract and workshop submissions are strongly encouraged, including ‘works-in-progress’, on patient involvement, communication of evidence, teaching, and more – the conference is an inclusive forum around how to make healthcare better.
The abstract deadline is Thursday 12 March 2020. There are reduced price places available for learners, and lots of opportunity for discussion and debate. We look forward to seeing you there!