Moving Patient Engagement to the Centre of Health Care

This op-ed originally appeared in The Institute for Research on Public Policy's Policy Options.

To improve the health care system, we need to think bigger about the role of patient engagement. Engagement must be embedded in daily practice.

“Nothing about me without me” is a common trope in health care, particularly in research, practice and legislative measures aimed at advancing patient- and family-centred care. But even where the best efforts to achieve this aim have been made, there is room for improvement; at worst, patient engagement in health system improvement, like so many other well-intentioned reforms, is at risk of being relegated to tokenistic box-checking.

The last decade has seen patient and family engagement — collaborative approaches that involve patients and families in health care research, policy-making and planning — soar from a fringe ideal to a field of study in its own right, and the proliferation of patient and family advisory councils across the country is partial evidence of this shift. Health system administrators are increasingly recognizing the importance of patient and family voices in decision-making; they offer toolkits and guidelines for organizations looking to employ patient engagement methods. But if we are to truly orient the health system toward those who use it, we will need to move beyond good intentions to accountability for engagement processes and outcomes alike.

Health care is among the last sectors to place service users at the centre of their planning and decision-making activities. Although we are seeing increasing emphasis on engagement in clinical interactions, research and hospital design, at the system level, we focus on process compliance to the detriment of more nuanced understanding of what patients and families truly value. While patient engagement has the potential to contribute to a range of health system goals, from improved clinical care and safety to integration, we too often treat it as an afterthought — a “nice to have” but non-essential cog in the machine that is health care.

Quality indicators are institutionally defined and fail to capture the diversity of community-level priorities, providing an incomplete picture of health system quality. Inadequate compensation limits the professionalization and continuity of patient advisers in institutional settings. A focus on short-term engagement projects hinders more systemic change, and the dominant approaches, from advisory councils to surveys, vary widely in the depth of their engagement and the stage at which they are introduced. In fact, a 2014 review of stakeholder engagement in health care found that nearly half of the studies did not report how stakeholders’ views were synthesized and used in the project, and only 9 percent of the reports described strategies to balance stakeholders’ views with competing viewpoints.


Fortunately, we do have some places to start. Co-design has emerged as a dynamic approach to collaboration, whereby all stakeholders — health professionals, patients and policy-makers — can participate in a cyclical problem-solving process that acknowledges and minimizes power dynamics and hierarchy. In many ways, co-design aligns with principles of community health governance, which proposes that the best collaborative partnerships in health involve three elements: empowerment of individuals through active involvement in framing and solving problems; a bridging of perspectives and creation of social ties across interest groups; and generation of opportunities for breakthroughs through collaboration. At its best, co-design makes space for marginalized voices, builds consensus through trust, and results in improved understandings of a problem space — outcomes that many traditional forms of patient engagement struggle to produce.


At the same time, we are also witnessing the adoption and refinement of new technologies that make it easier than ever to appreciate the lived experiences of others. Virtual reality could for the first time make it possible for the public to appreciate what it means when hospital patients are exposed to an average of 135 alarms per patient per day (about one every 11 minutes, in case you were wondering). Frailty suits, like the one used in the Change Foundation’s Experience Aging Project, are helping able-bodied people to appreciate what it’s like to grow old in a world largely designed without aging in mind.

The convergence of innovative engagement methodologies and technology suggests that we are getting closer to fulfilling the “Nothing about me without me” promise. But without adequate structures in place to facilitate this paradigm shift, these efforts will not deliver the systemic change we expect. We need to move patient and family engagement away from the edges to the centre of practice and, in so doing, acknowledge the subjectivity of “good care.”

Good health care means thinking bigger about the role engagement can play in health system reform. It means viewing engagement as an embedded orientation in daily practice. It means reliable and competitive compensation for patient and family advisers. And it means truly believing that this is a necessary and overdue pursuit. We already know that changing the system is necessary, and although it won’t be easy, we have plenty of places to start.

Co-Design for Health: From Inclusion to Equity

By Joseph Donia, and Pam Sethi & Ian Chalmers at Pivot Design Group

A Brief History of Co-Design

We live in a world that is more connected than ever. As the interdependent nature today’s problems becomes recognized, public and private sector organizations are increasingly turning to co-design for structured collaboration. Intragovernmental units like Denmark’s MindLab and the UK’s Policy Lab have been set up to involve stakeholders in decision-making, from early problem-definition, through to prototyping, testing, and measurement. Still, for many co-design remains a puzzle. What exactly is co-design, what does ‘involvement’ really entail, and which projects are best-suited to co-design?

Image Credit: Liz Sanders, 2008

Collaborative design, or co-design, emerged from Scandinavian participatory design approaches developed in the 1970s and early 1980s. One of the earliest and most frequently cited examples comes from Norway, where workers demanded the right to be included in the design of new technologies affecting their work (see the UTOPIA project). While methods and approaches may differ slightly, like its participatory ancestors co-design advances a few core principles: that those affected by a decision should have a say in its making, that all people are inherently creative, and that the design process should be inclusive and respectful. Put another way, co-design is aligned with a core principle of patient-centred design: ‘nothing about me without me’, and also aligns with trends in inclusive design, where products and services are designed to be accessible to as many people as possible.

from Designer/researcher as Expert -> Designer as Facilitator

In a sense, all design is co-design, and co-design can be the approach for practically any design project, whether communications, service, user interaction, or user experience, however an important feature that differentiates co-design from other design-based approaches is the way in which participation and inclusion are realized. Many design projects will require expertise from a specific domain (for example, a service redesign of a clinical cardiology unit), which might be outside the scope of knowledge of the public or other stakeholders. However, end-users such as patients, caregivers or family members are impacted by design projects should have a say at key decision-making junctures, such as when moving from prototype to testing, or testing to implementation. In this approach, traditional design roles shift. Designers become facilitators, and users become collaborators and equal partners. In this process, the collaboration approach its self is co-designed, down to as well, e.g. mutually agreed upon approach on how and when co-design participants are involved.

As such, a true co-design process will involve a degree of tension – and that’s okay! Decision-making may be slower, but will be more democratic. Not all stakeholders will be willing to share the power, and seemingly small factors affecting the design environment from its location, down to seating arrangements can have an impact on the success of a co-design project. A good facilitator will be attuned to these dynamics, and work to mitigate them wherever possible. For some facilitation tips, be sure to check out the list of resources at the end of this article.

Co-Design vs Action Research vs Experience-Based Design

Those familiar with social sciences research might draw parallels between co-design and action research – both of which emphasize learning by doing and can support community development. While co-design can be particularly useful at the ‘do’ phase of action research, it does not typically involve research ambitions, and is therefore more outcomes focused. As a design process, it also unsurprisingly relies much more on abductive reasoning and design-based methods than traditional scientific modes of inquiry.

Another related approach, which even shares part of its name, is experience-based co-design (EBCD). EBCD is a co-design approach created by the UK’s National Health Service and employs its own particular methods (notably video-recorded stories as a way to synthesize insights), and has an explicit focus on improving experiences of care.

When does co-design work best?

Addressing broader health quality issues, particularly equity and access, can be well suited to a co-design approach. At the same time, it’s worth noting that some projects are better suited to co-design than others.

In general, co-design works best when:

  • Your problem isn’t yet clearly defined
  • Your current solution or approach isn’t working and you don’t know why
  • You have evidence, but implementation has been/will be a challenge
  • Many stakeholders are involved, and each advance competing definitions of value

You may encounter challenges in your co-design project if:

  • You’re on a tight timeline
  • There’s a risk of politics compromising democratic decision making

Because of co-design’s inclusive and democratic nature, it is often touted as an inherently more ethical approach, making it particularly suitable for addressing health equity. In fact, a co-design approach was at the centre of an Irish policy and service project which aimed to improve equity, access, and integration of services for people experiencing homelessness. At its best, co-design makes space for marginalized voices, resulting in solutions that are more culturally relevant, which in-turn can increase trust and social capital – a currency designers, public officials, and private sector organizations will increasingly be expected to trade in.

Co-Design & Health Equity

The ideals of co-design shouldn’t ignore the fact that co-design too, is deeply intertwined with politics of class - who gets to participate in design activities can depend on who has access to the designers and institutions organizing the events, which is largely determined by social factors. Designers and project leaders will need to take that into account, effectively co-designing their co-design projects to reduce harm and exclusion in an iterative process throughout that is open to feedback. Similarly, no two co-design projects will look alike, and while toolkits are useful for introducing co-design methods and concepts, each project approach should be adapted to local knowledge and practice.

Co-design represents a powerful approach to involving communities in their own care, but can stand in contrast to many established ‘ways of doing things’, making co-design as much a culture-change project as it is a set of methods. Knowing where co-design is appropriate, and advocating for it at every opportunity will go a long way to ensuring that when you’re designing for communities, you’re doing right by them.

Want to learn more about co-design? Check out these resources below, or contact us.


Politics & Design Method


New Zealand Weitemata District Health Board Health Service Co-Design Toolkit

The Co-Design Workshop: The Facilitator’s Pocket Guide Co-Design Tools Introduction

WACOSS Co-Design Toolkit

WACOSS Co-Design Toolkit Project Appropriateness Checklist

New South Wales Council of Social Service Co-Design Principles


Patient involvement 2.0: Experience-based co-design supported by action research

A Framework for Organizing the Tools and Techniques of Participatory Design

Probes, toolkits and prototypes: three approaches to making in co-designing

Co-creation and the new landscapes of design

Experience-based Co-design and Healthcare Improvement: Realizing Participatory Design in the Public Sector

Co-design and implementation research: challenges and solutions for ethics committee

2018 AOHC Reading List

2017 OCSA Conference Reading List

My Care Plan: Join Me at Two Upcoming Conferences

My Care Plan: A Tool for Advance Care Planning & Insight Generation

I'll be presenting My Care Plan at two upcoming conferences this year.

First up, Health Shared Services Ontario's 2017 Achieving Excellence Together Conference in June, followed by The Canadian Hospice and Palliative Care Association's 2017 Canadian Hospice Palliative Care Conference in September.

My Care Plan is a tool for advance care planning and innovation-focused insight generation. Through collaborative visualization, it helps patients, their families, and care providers, to imagine how illness will affect thoughts, feelings, and actions at key points along their journey.

Find out more about My Care Plan in the Fall 2016 edition of AVISO.

View the scientific poster presented at the inaugural meeting of Health Shared Services Ontario.

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