“There is nothing more powerful than an idea whose time has come.” These words by French novelist and historian Victor Hugo come to mind when we think about patient engagement in our healthcare system today. Discussion of patient engagement is now ubiquitous nationally and internationally. In just one week this past October, we were given three powerful examples: Dr. Eric Hoskins, Ontario’s new Minister of Health, outlined his vision and strategy for the province including stating (and then tweeting), “We are moving away from a time when we used to provide care FOR patients to a time when we provide care WITH them”; the Mayo Clinic for the first time invited a patient, Dave DeBronkart (popularly known as e-patient Dave), to serve as their annual visiting professor; and Health Quality Ontario announced its inaugural Director of Patient Engagement to help develop strategies to shape the provincial quality agenda through the lens of patients, caregivers and the public[1]. Expanding to the full country we could list dozens of articles, conferences, media stories and twitter discussions exploring patient engagement.

Most of us now intuitively recognize that patient engagement is good thing. We can see the benefits of patients actively participating not only in their own care but also in shaping the system in which they receive care. In some respects the surprise is not that discussion of the patient engagement is so prevalent but how fast it has grown (perhaps the other surprise is how long it has taken us to get here). Even just a couple of years ago the idea was rarely discussed. Regardless, to reference author Malcolm Gladwell’s concept, and book of the same name, it feels that we have reached a “tipping point” in believing that we need to engage patients in their care and in the design of the system.

We are reminded of a haunting message from the very first essay, “Ghost of Healthcare Despair” that launched the essay series:

“Do you like my robes? They are a testament to my many victories! Each of these documents contains a moment of genuine insight and consensus in the healthcare system when a problem was well defined and a practical, innovative strategy was clearly articulated… but then, it was never acted upon! Ha ha ha! I have quite a wardrobe. Each document represents hours of volunteer and paid hours of hard work, often by the best and brightest. Each document contains someone’s hope that they could make a difference. Never am I more powerful than when the right idea is offered by the right people at the right time and yet, it becomes a study or report, and it dies somewhere in these halls, ending up adorning me in splendid fashion.”

And the counter message from the Ghost of Healthcare Hope:

“If you want to accelerate change and improve quality and patient safety outcomes on a larger scale, you have to do things differently. Collectively you have either a legal or moral authority to demand and promote quality and patient safety: some of you have both. Collectively you have the power to make healthcare accountable to the patient, resident and client you have the privilege to serve. It will not be easy to adjust the current power balance but you must, given the ever-changing and dynamic nature of the patient-provider interface.”

Now comes the hard part. We’ve got to stop talking about it, and start doing more of it. Personally, whether we think of this from our collective perspective as a patient, front-line physician, leader of a provincial and national health organization, son with aging parents who live in another city, brother, father, husband or grandfather, patient engagement is hard to operationalize. We explore five questions that we will have to wrestle with as we move from the powerful idea of patient engagement to effective implementation.

1. What do we call it and how do we define it? “Patient-centred,” “patient experience,” “patient co-design,” “patient satisfaction”: the terms abound and so do the associated definitions. At the recent 2^nd National Forum on Patient Experience participants were asked to define “patient experience.” The result was dozens of moving, thoughtful and highly discordant submissions. In some respects it feels like the definition and terms may not matter. It may be like the famous quote by Justice Stewart on the topic of pornography: “I will know it when I see it.” On the other hand, words are powerful and a common understanding of terms matter if we are going to have an effective conversation.
2. Aren’t we all patients? We have been asked in many settings by those in healthcare, “Why are we going out to find patients? We have been sick many times and can give you that perspective.” While most of us in healthcare have been a patient or a caregiver, when we enter the system each day the skills, experiences and knowledge we are asked to draw upon is not that of patient. Trying to wear too many hats at once will short-change the value of including those who represent only the view of the patient.
3. Are we listening to all the patients? It is important that, as we strive to involve patients, we are broadly representative. We need to work hard to include patients whose illness, language skills, economic status, cognitive abilities, geographic isolation, cultural differences, et cetera, make it harder for them to participate. Engaging marginalized patients takes dedicated effort and different approaches.
4. How does good patient experience jibe with appropriate care? As more health institutions collect and report patient satisfaction scores (or patients independently report on forums like ratemds.com) providers can feel trapped into giving “bad care.” Providers may feel that denying patient requests for inappropriate medication or testing will yield lower scores. Patient engagement should be seen as a bilateral dialogue and a chance to exchange wants and perspectives, not a blind capitulation to the view of the patients (or vice-versa). It is also important to think carefully about reporting tools.
5. How do we do it? While there is a growing body of experience with some early kernels of research and evaluation, the reality is that we don’t fully know how to effectively implement patient engagement. There are surveys, focus groups, advisory panels and numerous other tactics each with pros and cons, each needing to be well executed. We need to keep innovating new approaches while committing more effort to rigorous evaluation and sharing of learnings.

The Ghost of Healthcare Hope returns…

“To achieve the promise of the future, change will be required at several levels: changes in our personal behaviour, changes in our institutional cultures and changes at the level of our healthcare systems. Leadership must create the conditions for positive change in multiple healthcare settings, and must ask some serious questions to address the five questions raised. My hope is you will ask these questions over and over again:

1. Do you avoid action that may not succeed?
2. Do you play it safe with easily attainable goals? 
3. Do you treat vision and mission as noble ideas, without everyday action to demonstrate them? 
4. Do you bury or spin bad news — suppress truth and avoid transparency — even though the information might provide a compelling case for change? 
5. Do you fear the risk of losing control? Do you need to be the recognized leader? 
6. Do you put on blinders about damage to patients, staff, and families? 
7. Do you truly listen to hear the patient? Are patients engaged in your new directions?
8. Do you congratulate yourselves based on short-term results made at the expense of long-term sustainability? 
9. Do you over-focus on the next big job and your need for increasing status? 
10. Do you ask yourselves, “Can I really do this? Should I have been better prepared?”
11. What behaviour have you tolerated in yourself or others that can no longer be tolerated, given your full commitment to patient safety and quality of care through patient engagement?

Based on moments of personal reflection, as leaders, you can undertake your key responsibility, which is to create the conditions within the healthcare system to outgrow today’s challenges. How can you as leaders meaningfully tap into and create a culture that encourages the expression of intellect, passion, commitment and experience by all levels of the delivery system to make real change that satisfies healthcare consumer needs and expectations?”

There are more questions and challenges to patient engagement. Many of the questions don’t have clear answers and in facing these challenges we will undoubtedly stumble. However, in the interest of better quality care and a sustainable system we must, jointly with patients, keep asking, keep stumbling and learning, and ultimately we will succeed.

My guests next week are Marg McAlister and Sue VanderBent. We talk about the code language we use.

[1] In this essay we use the term patient engagement to refer not only to the patient but to their caregivers also. We would also further broaden the definition in many cases to include the public more broadly. 

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