#DigitalHealth: Patient Engagement Does Not Imply Patient Empowerment

Patient engagement is a phrase that is everywhere now. It is part of the vernacular in advocacy circles, government, health technology companies, and payers. It used to signal a new healthcare ecosystem in which the patient is more of a spotlighted consumer; where reimbursement hinges on patient satisfaction, where the shortage of physicians dictates new care paradigms, and where the cost of healthcare must decrease as well as be redirected to wellness and home care from the more expensive treatments of preventable chronic diseases and institutional care. The Center for Advancing Health defines patient engagement as “actions individuals must take to obtain the greatest benefit from the health care services available to them.”  It is defined by an active role that patients play in their own care.

According to the National eHealth Collaborative, the Five Phases of the Patient Engagement Framework consists of:


Each of these phases has a process corresponding to a stage of Meaningful Use.  They are also provider-facing, in much the same way the Patient Centered Medical Home is.  I agree fully with the framework of ‘INFORM ME’ preceding ‘EMPOWER ME’.  But the accompanying narrative (“A healthcare provider in this phase demonstrates basic levels of patient engagement with an emphasis on the use of simple tools that make healthcare more convenient and accessible. This also includes providing patients with standard forms, both printable and electronic, and information about advance directives, privacy and specific conditions.”) implies that a patient will become informed if they can use simple technology tools. I would say that the technology is a tool, not a solution to informing patients. The technology itself must be put into a framework which involves human interactions and ‘EMPOWER ME’ refers to “advanced patient engagement activities through substantive use of health IT.”  If the MU directive only requires 5% of patients to have patient portals, how substantive is it?  Do patients need to wait for this third phase to be empowered?  Should Stage 3 of Meaningful Use be a surrogate for true patient engagement?

Physicians and other providers need more than this framework to begin to engage patients. There needs to be a change in the mentality and culture of healthcare on the part of all stakeholders to empower patients before they become engaged. When my practice hired a nurse practitioner 13 years ago, referring physicians were livid that patients were seen (for routine follow-up, not consultations) by a non-physician. That culture has since changed dramatically, but took many years to do so.  Empowerment or enabling will come simply with the realization of how much one can do with lifestyle changes to improve health and maintain wellness.  This need not take years and should be independent of MU schedules and technology. Patient engagement is more  conceptually restrictive and technology-oriented than patient empowerment.  I submit that patient empowerment can come to those even unwilling or unable to use digital technologies. Without empowerment there can be no engagement. Engagement cannot be passively bestowed upon a patient because technology is available.  Patient empowerment should start in schools. Children are always seeking to become enabled in all aspects of life, and I believe that teaching them how much they can do to keep themselves well will, if done appropriately, yield huge benefits.  I applaud the efforts of the e-Health Collaborative. But we need not wait for MU to mature nor depend upon technology to have patients obtain the respect or responsibilities from others to become empowered, which only takes knowledge and a change of culture.  Patient engagement will require technology including mobile health and other tools.  there is no debate about that. Demographics and economics dictate this. I am a champion of technology.  But for technology to succeed as an integral part of patient engagement, empowerment must occur first.  Critics of engagement and empowerment will say that there are many patients and consumers who do not desire to participate in their care. I realize this and that topic is for another discussion.  The above implies to those who wish to.

About davidleescher

David Lee Scher, MD is Founder and Director at DLS HEALTHCARE CONSULTING, LLC, which specializes in advising digital health technology companies, their partners, investors, and clients. As a cardiac electrophysiologist and pioneer adopter of remote patient monitoring, he understood early on the challenges that the culture and landscape of healthcare present to the development and adoption of digital technologies. He is a well-respected thought leader in mobile and other digital health technologies. Scher lectures worldwide on relevant industry topics including the role of tech in Pharma, patient advocacy, standards for development and adoption, and impact on patients and healthcare systems from clinical, risk management, operational and marketing standpoints. He is a Clinical Associate Professor of Medicine at Penn State College of Medicine.
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20 Responses to #DigitalHealth: Patient Engagement Does Not Imply Patient Empowerment

  1. David,

    Your basis premise regarding the difference between patient engagement and empowerment are on the money.

    The problem with the National eHealth Collaborative’s Patient Engagement Framework is that it is….well wrong. It starts with the premise that patients are like “blank chalkboards” walking around waiting for providers to do write something . It presumes that patients …aka people…are unengaged…and that is just plain wrong. Most people are engaged …just not in the way providers (including HIT folks) expect or want.

    If people weren’t engaged…how do you explain the 70%+ that say they go online every year to look for health information…or the 82% of adults that see their PCP every year? If you define engagement as the percent of people who visit a provider PHR or web portal then yes you would conclude that most people are not engaged. But perhaps the problem is that the portal content is not perceived as relevant by the patients? Perhaps we are using the wrong metrics to measure engagement?

    Even worse…maybe the question isn’t how engaged patients are…but rather how engaging providers are?

    I am involved in a big research project where we are using conversation analysis to address this very question…and many more.

    Steve Wilkins, MPH
    Mind the Gap

  2. Impossible to engage if one of the actors isn’t empowered to do so – you’re dead right.

    The culture of healthcare has been focused on “do what I tell you” and billing codes since time immemorial (or at least the mid-20th century), so shifting the culture to one of collaboration is going to mean time, and tears, and more than a little blood on the floor.

    The potential for empowerment represented by mobile tech and “quantified self” tools isn’t even scratching the surface inside the healthcare industry … yet. When providers wake up and realize that patients are starting to crowdsource their own care, create their own data, and have fully empowered themselves – with an attendant impact on provider revenue – they’ll wake up and smell the coffee.

  3. Love your work, David. But, two comments:
    1) Looking to NeHC for rigorous thought or use of language is a doomed endeavor. It’s a nice framework, but it reflects a certain set of buzzword assumptions where different concepts are jumbled together. The same with their surveys. It reflects committee thinking at its most mundane.
    2) I realize this is within an “e-patient” context, but it is important to emphasize that empowerment does not require technology. It can be done within the context of a relationship. The technological role may be significant or insignificant. We in our careers may focus on one aspect, but we’ve got to keep the entire picture in mind.
    I recently posted on the Health Affairs blog an article entitled, “Not in my name: Real patient-centeredness means sharing power.See: http://t.co/w8BiUCwNPR. NeHC is an organization designed to share power on terms all “stakeholders” find acceptable — meaning not too darn much.

  4. @Cascadia aka Sherry Reynolds says:

    There might be a third option – one that starts with the premise that you need systems level solutions for systems level problems instead of assuming that the individual is the agent of change. You need to shift from engagement to patient centered ‘Design” to empower and engage nearly all of the players in a health care system including patients themselves.

    At Group Health Cooperative for example (620,000 members) they start all of their projects with the patient at the center. When we implemented the EHR starting in 2003 for example we looked at the patients workflows we went ahead (against the EHR vendor advice) read write access at go live (before the docs had CPOE even).. http://www.grouphealthresearch.org/news-and-events/stories/Patients-IT-ann-rept-2010.html

    Result long before MU back in 2009 58% of all patients were using the portal and 30% to 50% of all primary care encounters now happen remotely via email or the phone. They have also shifted to the medical home model and by year two both costs were cut and quality went up http://bit.ly/13sTTaA (and this wasn’t because patients grew up learning responsibility in schools but the systems of care itself were responsible) and provider satisfaction levels and burn-out have dropped now that in office visits are up to 20 minutes

    When they designed a new clinic – they included patients on the design team and eliminated the waiting rooms and brought the labs to the patients. https://www1.ghc.org/html/public/features/20120401-newclinics.html

    Their governance models (it is a co-op afterall) also include patients but many people don’t believe that the model can be duplicated since it is an integrated system so lets look at a different population – a large urban clinic that serves the homeless, recent immigrants and low income people.. The recent Open Notes Project. When they were simply allowed to view their own records online (yes they went to libraries or used their friends computers or phones) behavior changed, outcomes improved, patients loved it and no docs opted out http://bit.ly/13sUgCd

    The solution is not simply asking individuals to be more responsible, engaged, empowered but developing the systems that are more responsible, engaging and empowering if you really want a systems level change and solution.

    • Sherry,
      Thanks for your comments This is certainly a great model of patient empowerment: having their input in system remodeling. Real problems deserve real change, and require the input of all stakeholders.

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  6. David —
    Like Stephen Wilkins I also believe many patients are way ahead of providers with high levels of motivation and ability to use the internet to solve health questions. In fact, sometimes providers lash out at patients that seem to know too much! But, as with everything, the percentages are important — I suspect only 20% of patients are informed and engaged and only 20% of providers are engaged and internet savvy. Like you, I believe the patient portal is critical. it is hard to believe any reputable EHR system would not have the portal as standard equipment. Furthermore, any provider who thinks a BMW is better than a patient portal is nuts.

    Another item in this discussion the extensive research showing patients are more satisfied with the provider interaction if some imaging study is performed — even if the patient is told the imaging is not needed and evidence-based guidelines indicate the imaging is counterproductive. Imaging studies are one of the most costly and overused procedures. What is going wrong? The provider does the right thing and the patient is less satisfied!

    • Thanks for your comments concerning patient engagement, Ralph. I would respectfully disagree with reference to your estimated stats. I think that most physicians are ‘Internet savvy’. Why they do not engage digital tools to help patients is not that they are unsavvy, it is unawareness about specific tools which can help patients, including apps. The portal is key, however, MU which mandates only 5% of patient participation with them for meeting criteria is in my mind ridiculous. I would agree with you that patients are more satisfied if a drug is prescribed or any test ordered, becuase it connotes some engagement on the part of the physician. I think digital tools like apps would not only meet their need for that kind of engagement, but would ultimately prove more beneficial than a useless test or image.

      • I was flabbergasted recently when the an optometrist and a dentist I went to had web sites that allowed patients to see available appointment slots and actually make appointments. That’s internet savvy. Do doctors in your area do that? I am in the Denver area and don’t find that level of sophistication for physicians. Also, a university hospital where I was a patient had a portal — it was a glorified way for the billing department to communicate with you — no test results, no physician communication. So, a portal can be something other than an aid to patient engagement.

      • Ralph, you are absolutely correct. Portals are a door, as the name implies. There are good portals and less yes evil ones. Payers have been using portals primarily for marketing for years.

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  8. David, you are so right. Technology is simply a tool not a solution to engage or empower patients. Patients must have the desire to be active participants in care and those tech tools can help. But there has to be a cultural shift, a behavioral shift, on the part of both patients and physicians so that both parties enter into partnerships to increase quality of care, increase patient safety, increase patient satisfaction and medical provider satisfaction–all components of patient-centered care. The technology supports this. But if patients and providers don’t shift their thinking to a collaborative approach to care, technology is not going to have the significant impact we hope it will.

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