Dear Silo Buster: What Are We Learning from Practice-Based Research?

Silo Buster is an occasional feature highlighting people, places and projects crossing U of T Med domains and disciplines to advance collaboration, research and impact. Send your story ideas to medicine.communications@utoronto.ca.

Dear Silo Buster: UK doctors began doing research within primary care medical practices – and aggregating data among practices – decades ago. But the last 10 years has seen a boom in the number and size of these “living laboratories” of real-world patients, physicians and data, known as practice-based research networks. U of T is home to one of North America’s largest, called UTOPIAN, which began five years ago. What are we learning from this network of 1,400+ research-minded family physicians and its de-identified database of 550,000+ electronic medical records?

The UTOPIAN network is impressive in the scope of research it supports – from the impact of house calls to eating disorders to the use of email between patients and their physicians. The study of practice-based patient data – on a large scale – is revealing important insights while respecting patient and physician privacy. These insights can improve care as well as potentially ease some of the systemic pain in our publicly funded health-care system.

Prof. Michelle Greiver formally took the reins as Director of UTOPIAN in the fall of 2018. She is an Associate Professor in the Department of Family and Community Medicine at U of T and holds the Gordon F. Cheesbrough Chair in Family and Community Medicine Research at North York General Hospital. As a family doctor for over 30 years with a deep interest in quality improvement, Greiver knows the benefits of the network effect. And UTOPIAN has recently drawn support from an anonymous donor to strengthen its database infrastructure and develop new methods for data analytics.

Here are some of the lessons Greiver and her colleagues are learning from the silo-busting work of UTOPIAN:

Talk to patients differently – and talk to them first

Working with patients is a fundamental aspect of UTOPIAN research projects. Patients are given a voice as to what research questions are most meaningful to pursue. Consider diabetes care: family doctors and other primary care clinicians provide most of the care for patients living with diabetes. UTOPIAN is deeply engaged with Diabetes Action Canada, a national network that is part of Canada’s Strategy for Patient-Oriented Research (SPOR).  An important goal is to bring people living with diabetes to the table when designing and implementing research – not only as participants but as fully involved members of research teams.

Patients are members of UTOPIAN’s Scientific Advisory Committee and a patient co-chairs the Research Governing Committee that oversees the use of data in the recently launched National Diabetes Data Repository. “Patients have to come first. When we ask people affected by a disease what will make their lives better, their perspective has a profound impact on the value that our research can deliver to people,” Greiver says.

And then there are the most complex primary care patients, those who are elderly and are taking many medications: it’s estimated that every family doctor in Ontario has approximately 24 patients – in each practice – who are age 65+ and have been prescribed 10 or more different medications in any given year. That’s about 300,000 often frail men and women who may live isolated lives, and may be coping with illnesses like cancer, heart failure and depression all wrapped up together. They are at the highest risk of falls, hospitalizations, and other serious consequences.

“Patients can tell you how much of a difference it makes to their lives when we work together on reviewing the medications they take. The goal is to make positive changes that are consistent with their wishes for their own care,” says Greiver, who is lead investigator on a new “network of networks” study called SPIDER. The study involves data from complex elderly patients from seven regional practice-based research networks in Edmonton, Calgary, Winnipeg, Toronto, Ottawa, Montreal and Halifax. “We need to do better for complex patients in primary care and we know that the most complex patients account for over 50 per cent of health-care spending.”

The goal of SPIDER is provide assistance to family doctors as part of an intensive “learning collaborative” that includes resources, data and coaching to help review and de-prescribe medications safely and effectively. Practices across Canada will be randomly selected to participate in SPIDER, or to continue with usual care for some of their most complex patients. Early results are expected in 2021.

Data doesn’t travel but the impact does

Last month, Greiver and colleagues published a retrospective observational study in BMJ Open with 17 million data points from primary care sites across Canada and the UK. That is a powerful dataset that led to some important conclusions – and no one had to travel to participate.

This is UTOPIAN’s largest international study so far and it began with a practical question about a standard piece of equipment in family practice: Does it matter how doctors measure blood pressure – with a manual cuff or an automated machine? Take a look at cardiovascular outcomes (e.g. angina, strokes) and it turns out that how you measure does matter.

That’s because physicians using manual blood pressure cuffs sometimes round down to the closest blood pressure value ending in zero.  For example, an automated machine would record 123/82;  this can become 120/80 when a manual blood pressure is used. Using the proportion of blood pressures that end in zero as a proxy for sites where manual testing occurs, the data shows that over nine years patients in those manual-test sites patients had 25 per cent more risk of angina, and 15 per cent more risk of heart attacks and strokes. “We came to a very practical conclusion and are urging family doctors to reconsider manual BP measurements. Controlling blood pressure is important for patients, and it should be measured properly — with an accurate machine,” Greiver says.

Cultivate a culture of curiosity

Greiver credits the vision of her immediate predecessor as UTOPIAN director, Dr. Frank Sullivan, who had run large practice-based research networks in the UK, as well as Dr. Eva Grunfeld, Dr. David White and former DFCM chair Dr. Lynn Wilson for promoting and increasing participation in research among primary care trainees and faculty. This continues under current DFCM Chair Dr. Michael Kidd with over 30 active researchers in the department and growing involvement in UTOPIAN.

Studies show that trainees and practicing family doctors benefit from a culture that encourages curiosity and values innovations arising from daily interactions between doctors and patients. Practice-based research networks contribute to fostering this culture, which includes the creation of opportunities for leadership and role modeling. Greiver encourages trainees to consider a practice-based research network project. “Participating means more joy at work! It’s really the best of both worlds when you can care for your patients and at the same time contribute to research that can have large-scale meaningful impact for all patients.