Patient engagement: How can research help us get it right?

14 November 2014

There’s no doubt about it – patient engagement is hot. It’s the focus of conferences, reports, websites, and entire organizations. But how do we maximize its potential? Patient representative Colleen McGavin and MSFHR Vice-President, Research & Impact, Bev Holmes spoke at Northern Health Research Days earlier this month on how research can support increased patient engagement.

Patient engagement is happening all over in BC – in our health authorities and non-profit organizations, as well as through the ImpactBC-led Patient Voices Network and other programs funded by the Ministry of Health’s Patients as Partners initiative.

But even those most involved agree there’s a lot to learn.

Fortunately, there is increasing convergence on some important issues related to patient engagement. There seems to be wide support for the notion of “patient” as broader than someone experiencing illness at any given moment; family members as caregivers and the public as health system users are included in the definition.

Similarly, “engagement” is seen as broad – and active. It happens at an individual level, with people engaged in their own care, and at the organization and system levels, with people engaged in developing and improving services, programs, policies and funding decisions.

Finally, we seem to agree that not all engagement is equal. Consultation (giving input); involvement (rolling up your sleeves); and shared leadership (an equal say in decisions) are all valid but very different forms of engagement.

As well as this convergence, there’s a growing evidence base on what works in patient engagement, and an emerging sense of what we don’t yet know. Drawing on the literature – and specifically three recent examples of patient engagement research (lead authors Ross Baker, Antoine Boivin and Kathy Kovacs Burns) – we offer a few more thoughts on both these areas.

What do we know?

Engaging the right people for the right reasons is crucial. What is the goal of the engagement, who should be at the table, and what knowledge and experience are participants expected to contribute?

Patient engagement needs resources: time, money, infrastructure, skills. If we’re serious about patient engagement, we have to invest in it and support all participants – including health professionals and leaders – to play their part.

There are some good models for patient engagement – BC is a leader through Patients as Partners – so we probably don’t need to develop more. Similarly, we know a lot about the barriers, and can now focus on overcoming them.

We’re starting to understand the benefits, albeit mostly through isolated case studies.  As far as evaluation, indicators of success are emerging (see for example the Canadian Foundation for Healthcare Improvement’s measurement framework).

And of course there’s the small matter of a culture shift. People agree with patient engagement in principle, but it will need changes in attitudes, beliefs, knowledge and behaviour, as well as infrastructure support, to be successful.

What do we need to know?

We need a better understanding of the connection between patient engagement and outcomes. What are the mechanisms by which engagement translates into better decisions, services or care?  How do we set realistic goals for patient engagement?

How best can we recruit and support people? Statistical representativeness is important, but with smaller initiatives, people need to be able to speak on behalf of others. Once recruited and involved, how should we reward patients for service?

Researchers and practitioners emphasize the need to study how patient engagement unfolds in ‘real time.’ We have good theoretical models on the one hand, and good practical patient engagement on the other, but theory and practice could be better linked.

We’re learning about patient engagement at a project and organizational level, but what about the broader social context? What are some of the attitudes and beliefs – as well as system level structures and policies – that may influence success?

Opportunity knocks?

BC has an opportunity to develop a patient engagement research agenda – a concerted, collective effort to answer questions of importance to all of us – as part of two provincial initiatives. First, through Directions for Health Research, the provincial health research strategy facilitated by MSFHR, which includes a number of actions on the theme of patient engagement.  And second, through the BC SUPPORT Unit, part of the Canadian Institutes of Health Research Strategy for Patient Oriented Research (SPOR).

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