Engaged Patients & Patient Engagement:
Different Directions In More Ways Than One

The “patient-centric” definition of an engaged patient

For patients and patient advocates working with engaged patients the engagement flows exclusively from the patient to the sources of empowerment they can use. When Tom Ferguson defined e-patients as “empowered, engaged, equipped and enabled” that’s what he meant!

For someone like me, witnessing daily how large numbers of well informed cancer patients communicate with others, including peers and health care professionals, in order to get the quality of care they deserve but rarely get, the notion of an engaged patient is clear and simple. It is, simply dramatic shift away from the paternalistic old model of medicine where “doctors know best”.

An engaged patient is someone deeply involved in the scientific understanding of their disease, fully aware at all times of the entire spectrum of available therapeutic options. It requires a set of learning, cognitive and psycho-social tools that can only be acquired by conversing often with a real network of peers who are similarly involved in this complex endeavor. Because most of the communities where these activities take place are either hidden or hard to find (due to privacy concerns), the health care world is usually unaware of the depth of experience demonstrated daily by these groups. It reminds me of what Michael Nielsen said in Re-Inventing Discovery:

But often the most important revolutions aren’t announced with the blare of trumpets. They occur quietly, too slowly to make the news, but fast enough that if you aren’t alert, the revolution is over before you’re aware it’s happening.

The “professional” definition of patient engagement

For most people working in implementing HIT, ACOs or any form of system change (that includes all the HC money & power crowd) , the engagement flows from the various professional stakeholders of the health care system to the patients. It is a direct extension of the concept of consumer engagement.

A few examples are in order. Before we dig in these, let me state  2 simple data points:

  1. Patient Engagement has as many definitions as the number of blog posts about it and each is instilled with “the soft bigotry of low expectations”
  2. The current use and abuse of the term & the hyperbole attached to it are proof the expected results are just another bubble waiting to burst.

Let’s start with an openly paternalistic definition. Steve Wilkin, in 2012, wrote in “Patient engagement is the holy grail of health care“:

For health care professionals, patient engagement is the holy grail of health care.  It is the key to patient adherence – a prerequisite to achieving better outcomes, fewer ER visits and hospitalizations and more satisfied patients.  It is easy to recognize an engaged patient – they do what their health care providers recommends …what their health care team knows what is right for them.

Michael Millenson, one of the oldest proponents of patient engagement gives a clue of what the term means for those interested in system changes. In a white paper entitled “The Engaged Patient and the Accountable Care Organization” that “examines five organizations that have engaged patients in the hospital and outside of it” Michael wrote:

“because patient-centeredness is a relatively new concept, many policymakers and providers are unaware that engaging patients in these different ways can produce significant clinical, economic and social gains.”

Susan Dentzer to title her Feb 2013 editorial “Rx For The ‘Blockbuster Drug’ Of Patient Engagement” recognizing that

“the topic of this thematic issue of Health Affairs, patient engagement is variously defined; the Institute for Healthcare Improvement describes it as “actions that people take for their health and to benefit from care.” Engagement’s close cousin is patient activation—“understanding one’s own role in the care process and having the knowledge, skills, and confidence to take on that role,” as Judith Hibbard and coauthors explain”

Note that Susan Dentzer’s editorial followed by a few months Forbes “Patient Engagement is the Blockbuster Drug of the Century

Finally, the Center For Advancing Health (CFAH) has the most patient-centric definition “focusing on behaviors of individuals relative to their health care that are critical and proximal to health outcomes, rather than the actions of professionals or policies of institutions”:

Engagement is defined as actions individuals must take to obtain the greatest benefit from the health care services available to them.Engagement is not synonymous with compliance. Compliance means an individual obeys a directivefrom a healthcare provider. Engagement signifies that a person is involved in a process through which he harmonizes robust information and professional advice with his own needs, preferences and abilities in order to prevent,manage and cure disease.

The result is it’s Engagement Behavior Framework. Of particular interest here is the following note:

A specific list of “engagement” behaviors was developed by Judith Hibbard in 2004. Hibbard’s list of behaviors served as the core of the Engagement Behavior Framework and was supplemented by behaviors identified through the activities described below. Her aim was to develop a parsimonious survey instrument by identifying the fewest key behaviors that could indicate attitudes and intentions toward engagement. In contrast, our aim was to expand this list for the purposes of assembling a detailed,comprehensive picture of the implicit and explicit demands posed to individuals by current health care delivery practices.

Remarkably CFAH offers as its last (10) section of the framework a strong one

Seek Health Knowledge

  • Assess personal risks for poor health, disease and injury and seek knowledge about maintaining health and caring for one’s self
  • If diagnosed with a chronic disease, understand the condition(s), the risks and benefits of treatment options and personal behavior change(s) by seeking opportunities to improve health/disease knowledge
  • Know personal health targets (e.g., target blood pressure) and what to do to meet them

Even though CFAH Engagement Framework is patient-centric and miles ahead of all others, it still doesn’t take into account the real impact of the Network Effect and of the fact that in the Internet, the smartest person in the room is the room.

So, where is the problem?

From my viewpoint the problem is encompassed in the following statement, from HIMMS own blog:

HIMSS is launching a new book,  ”Engage! Transforming Healthcare Through Digital Patient Engagement” exploring the benefits of digital patient engagement, from the perspectives of physicians, providers, and others in the healthcare system, and discussing what is working well in this new, digitally  collaborative environment.

That probably works, if you think of patient engagement as, essentially, a marketing tool and you mention “this new, digitally  collaborative environment” only to mean a slightly improved approach at communicating with your customer. That is a very far cry from going even half way to where some commercial entities have gone over the last 10 years or so. And it is a world apart from my world of truly engaged patients who collectively and constantly cull anything published about their disease, create centralized tissue banks to generate advances & scientific discoveries and do all the activities necessary to maintain a network of microexperts.

Paul Cerrato, editor of InformationWeek Healthcare, in a 2012 piece said it best:

But such mandates (MU mandates) only scratch the surface. In fact, in many respects, Meaningful Use is almost meaningless to many patients. What the public really needs is a full- throttled campaign to get them on the road to self-care, and full transparency from hospitals and medical practices.

A message reinforced by Mack Baniameri: without patient participation, there is no patient engagement

In other words “Engaged Patients & Patient Engagement are the Ying & Yang of Health Care”.

 

 

9 comments

  1. I completely agree. I dislike the terms “patient engagement”, “patient centered” and the other jargon because they have been co-opted by organizations looking to be politically correct. The bottom line is that the patient is the expert about him or herself (whether currently healthy or with a medical condition). Online communities provide us with a learning environment (and support system) that goes well beyond what is possible in real life. Magic occurs in online interactions. I was chief medical officer of a physician-only online service in the 1990s and while I do not advocate that we go back to developing physician-only networks, the communication and collaboration that was focused on solving clinical problems was breathtaking. I suggest that we forget about labels, develop all clinical processes of care around the needs of the patient and continue to promote online communities for the benefit of both patients and health professionals. The current evidence (based on randomized controlled trials) is inherently flawed and we need to find ways to harvest the expertise of patients (and the details of their experiences) to improve the quality of care. I believe that online patient communities are a major piece of the solution.

  2. eCaregiver

    I’m still trying to understand why we haven’t explored the community-based participatory approach and ask communities the best way to communicate with them. To Beth’s point, patients are the best experts on themselves, but determining the “how” on better care management and decision-making is a value-add provided by Health IT. The other part of it is how we define the “patient.” As a caregiver, the definition shifts from the “I” to the “we.” In this case, the issue isn’t engagement, the caregiver is already engaged, but empowerment and improved care coordination in an automated and efficient way.

  3. Great blog post! I share some of your perspectives on patient engagement and offer you the following definition:

    pa•tient en•gage•ment – a person’s sustained participation in managing their health in a way that creates the necessary self-efficacy to achieve physical, mental and social well-being.

    I believe the use of psycho-social tools such as social modeling (peers as you referenced them) as a tool for building self-efficacy and improved engagagement is an under-leveraged mechanism in healthcare delivery. I think there are many others aspects too (you can read about them at http://www.betterpatientengagement.com if interested). Improving patient engagement is a complex, multidisciplinary, multi-functional endeavor which leaves this critical issue ambiguous, fragmented and largely under-managed in most healthcare delivery systems.

  4. Excellent article and I especially liked the point made, “it is a world apart from my world of truly engaged patients who collectively and constantly cull anything published about their disease, create centralized tissue banks to generate advances & scientific discoveries and do all the activities necessary to maintain a network of microexperts.”

    I shared this article on Twitter and my Facebook page at Rheumatoid Arthritis Support.

    Thank you,
    Sandy Guerriere

  5. John Grohol

    You know that DocTom also subtitled his paper, “How patients can help heal health care?” He didn’t say — nor I suspect — did he ever think that they could do it all on their own.

    In other words it needs to be a cooperative partnership. Not one side yelling or making demands on the other. A conversation is where both sides come to the table and share ideas, strategies, goals, and an action plan.

    A dictatorship is where one person oversees the entire government/economy/company to direct exactly how he or she thinks it should be.

    DocTom was about conversations and partnerships — not about dictatorships.

    • John,

      only a fool would think either side can do it alone. And of course, when it relates to patient-doc interactions it has to be fully a cooperative partnership. But making that obvious statement the end game misses the bigger point (that was the single most powerful point Tom made during more than 35 years): 85% of care is self-care. The medical world has spent many years making sure no one pays any attention to these 85%, since as we all know, there is no money nor academic advancement helping people get better fully on their own.

      This blog will emphasize what people are doing to improve the care in self-care and will hopefully show many examples where self-care brings better care across the continuum of care.

  6. I completely agree, and now I am clear why the clinical terms have not resonated w me. Paternalistic programming will never and has never created long term health improvement. Thank you for an amazing post. I’d like the opportunity to hear from you- including commenters– on how best to convey the concept, and then we can change the results. S do reply

  7. Like the trite conundrum of measuring commitment and involvement (the chicken and pig scenario), the term “engagement” is rife with ambiguities. Gilles’ post points to deeper implications including the dichotomies inherent in our misuse of the term: he starts early by alluding to “consumers | patients”, then he reminds us of the intrinsic boundaries of the state of engagement, and suggests that the term may be inherently political and skewed. Just maybe, like the pig in the metaphor, engagement is committed. Thanks for the post.

  8. We cannot do it alone – and the “we” in that phrase is both patients and providers.

    I see Beth’s comment as a great framework for the way forward, since it’s important that clinicians be able to have non-public community conversation to talk about discoveries and theories that aren’t ready for primetime yet, but that need expert discussion. The patient communities that have arisen around cancer, chronic conditions, and other health topics can start to form a proving ground for clinical ideas as they emerge. I know I’d be happy to volunteer for an N-of-1, or an N-of-many, clinical trial of a treatment for something I deal with.

    In my dreams, I think of a day when the FDA is a lean and agile organization. Until that dream day, we’ll still have to wait 10 years for new clinical options that are available in western Europe in 2-3 years …

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