Redefining Patient Engagement

Patient engagement has been called the “blockbuster drug of the century.” The problem is that nobody can agree on what patient engagement actually means.

Over time, “patient engagement” has been used to sell products and software, inspire healthy behavior change, promote technology advancement in healthcare institutions, strategize ways to meet federally mandated meaningful use requirements, “get” patients to do something, and more.

It can be an empty term, a loaded term, a vague term — and it can even be a pejorative when it is used punish patients for their perceived “lack” of engagement. ‘Patient engagement,’ like ‘adherence’ or ‘compliance,’ is a term used to talk about or at patients but not with them.

Above is the most liked and retweeted tweet from this year’s Medicine X conference, from Erin Moore, advocate and caregiver of a child with Cystic Fibrosis.

Clearly this is a hot topic.

Below, we describe a process we undertook to better define this term with patients, which ultimately led us toward themes of teamwork, empowerment, and removing barriers to good care.

Earlier this year, my colleague Jeremy Beaudry, fellow patient-designer Nina Gilmore and I were accepted to explore and redefine ‘patient engagement’ with a group of patients, designers, and other attendees of the Healthcare Experience Refactored (HXR) conference. We planned a half-day workshop intended to guide attendees through a number of collaborative, participatory activities with the following goals:

  • create a more nuanced definition of “engagement”
  • envision new tools, models, and behaviors to support a range of engagements in healthcare
  • develop a recommended set of words and guidelines for talking about this topic with different audiences

It was vital that our workshop included actual patients so that their stories could be the foundation for the work. Conference organizers generously gave five patients and caregivers free entry so that they could take part. (Huge thanks to Amy Cueva and team!)

Pre-workshop survey

As we prepared for the workshop, we realized we needed to understand more about people’s perceptions of this term. We put together a survey, distributed it to our social networks, and received 113 responses (you can download the full report here). Most were from patients, caregivers, and designers, though we did have responses from entrepreneurs, technologists, healthcare administrators, and others.

Here is the breakdown of respondents:

We asked a few simple questions:

  • What is your role?
  • What does patient engagement mean to you?
  • To what extent do you agree that ‘patient engagement’ is a useful term?
  • Please explain why you feel that way.

The survey responses yielded many illustrative quotes in the open-ended answers. We received the below responses to the first open-ended question:

What does patient engagement mean to you?

Patients do not seek engagement with healthcare, portals, doctors, medication, etc. The type of engagement patients seek is engagement with their families, with their friends, with things they love to do in life. We must redesign our health care system to promote autonomy not engagement. Patients with chronic conditions already spend most of their time in self‑care.
— Patient
Patient engagement is a maligned term used by the healthcare industry to conflate a mix of customer service and accounting for preferences, all with a subtext of keeping the patient in a second class role.
— Healthcare Administrator
Having the patient at all steps along the diagnosis and treatment journey; considering the patient’s perspective and desires in decision making; and realizing that patients demand a voice.
Activating the interest, attention, and involvement of people who are seeking or receiving medical care, and providing opportunities for them to influence the environment, culture, services, products, or systems of care they experience.
It’s a paternalistic term that tries to bring consumer engagement into healthcare without dealing with the real & messy effects of engaged patients
– Entrepreneur/product developer
I don’t like the term very much and prefer “partnering with patients”. As a very wise parent of a child with chronic illness told me, “what do you mean ‘engaged’? there is no one more engaged in my child’s care”.
– Healthcare Improver
Bullsh*t programs put together by health systems.
It’s a buzz word typically used by providers and industry to refer to the inclusion of patients in a healthcare process.
I look at the ladder of engagement where at the low point patients are coerced, or passive. As you move up the levels you are aiming to be involved in collaboration, co-design and co-production, and ultimately to be recognized as a patient leader, able to collaborate with and influence decisions with other healthcare leaders

These quotes speak for themselves, and there are many more where these come from in our report! I could read them all day. Feel free to download it and take a look.

Despite the overwhelming sense (our own, and from the responses we gathered) that patient engagement is a problematic term, we were surprised by the percentage of respondents who thought the term was in some way useful:

To what extent do you agree that “patient engagement” is a useful term?

(1=strongly disagree, 5=strongly agree)

More people answered in a neutral or positive way than in a negative way, which seemed to contradict what we were hearing anecdotally. Some further answers to this question:

I believe that the more a patient is involved in their care & decisions, the better chance of greater outcomes, more compliance, & quicker healing.
Putting words to the patient’s involvement in their care makes us feel respected and included for our role in our care

Though of course many respondents did have a negative view of the term. For example:

I think it’s a valuable term but I think different people define it differently. I think often times patients are the most engaged in their health and care, and the attempt by healthcare providers to “engage” them in the activities or priorities of an institution when those activities or priorities are not in line with the patients is a waste of time and energy, and a tokenistic approach to patient centered care.

Processing the results of the survey, we did a word count of the top action words that people used in their open ended comments. The goal was to start to identify words that we might use instead; words that communicate the underlying principles of engagement and what we are really trying to say.

Involve (28)
Make decisions (18)
Understand (17)
Participate (14)
Act (12)
Communicate (12) 
Educate (8)
Partner (7)
Advocate (6)
Empower (6)

What did we learn from this exercise? Right away, we see a number of words that are all about collaboration and partnership: Involve, Communicate, Participate, Partner. We also see words about knowledge, ability, and autonomy: Act, Advocate, Educate, Empower, Make decisions, Understand.

In the comments, we heard descriptions of coming to a shared understanding with providers and making decisions together. Much of what we heard is about relationships and teamwork between patients and providers, and indeed if we look further down our word list we see many more words along these lines: Interact, Connect, Team.

The survey responses indicated that patient engagement is really about strong patient-provider relationships and teamwork, giving patients the ability to manage their own health. The next step for us was to see whether this would play out in our workshop.

The workshop

The day of the workshop arrived, and we had about 20 attendees, including 4 patients and one caregiver. We had planned the following exercises:

  • Sharing stories
  • Identifying themes
  • Mapping out an ideal patient experience
  • Creating posters to illustrate patient engagement (without using those words)

We had 4 groups, each one with a patient or caregiver at the table. After a quick introduction, we jumped in, and the group started interviewing one another about good and bad interactions with the health care system. From there, each group identified some key themes and wrote them down.

The next step was to map out an ideal patient experience on large whiteboard surfaces we had brought to the workshop. This proved to be the most challenging part of the workshop for our attendees, but they were good sports and all came out with really interesting maps. The concepts that emerged from this exercise were key qualities of an ideal patient experience that could be used to create our collective definitions of patient engagement.

Finally, each group created a poster to illustrate what patient engagement means to them, without using the words patient engagement. Some clear themes came into focus in this last activity. One group focused on the idea of ‘removing barriers’ — that patient engagement is not so much about getting a patient to act, but it’s about removing the barriers that prevent them from getting and staying well. Their posters reflected this:

After this initial poster they came up with the idea for PATIENT LAND:

Instead of blaming patients for not being engaged, this group’s point of view is that we should create a system that works better for them.

Another group picked up on a similar theme of transparency, system efficiency, and personalized service:

Another group explored the idea of a ‘care concierge:’

One group spent a lot of time thinking about efficiencies and coordination on the provider side. When this is lacking, the burden falls on the patient; when providers are working in an efficient and collaborative system, everyone has a better experience.

The overall feeling in the room was energetic, warm, fun, and appreciative. We came together for a few hours and had great conversations, and after the session we displayed the posters in the main hallway for the remainder of the conference.

What did we learn?

After processing the results of the survey and experiencing this collaborative workshop at HXR, we had a much better sense of the important themes that give meaning to patient engagement. We heard:

  • Collaboration, relationships, trust, and listening are key.
  • Patients need autonomy — the information and ability to take care of themselves.
  • The healthcare system needs to work better for patients. By removing system barriers and increasing efficiencies and collaboration on the provider side, we can improve the experience for patients (and everyone).

Where do we go from here?

The information we gathered through the survey and workshop is rich with insights, and we would like to build upon it and create some kind of a document — a set of guidelines, a manifesto, or a pattern language, for example — that could both serve as a tool for others and advance the conversation beyond the space of our brief event.

What you can do:

  • Take the survey and tell us what you think of Patient Engagement
  • Read the survey report
  • Share your thoughts here. How is this term used in your organization? How can we take this work further? Add your comment below.
  • Are you interested in helping us take this work further? Leave us a comment below or write us directly at /

Additional reading on patient engagement: