Why We’re Getting Patient Engagement Backwards

Mean Joe SmithThere’s a mantra in healthcare right now to “drive patient engagement.” The idea is that informed and engaged patients play a crucial role in improving the quality of care our health system delivers. With the right information, these healthcare consumers will be more active participants in their care, select providers based on quality and value metrics, demand appropriate, high-quality, high-value services and choose treatment options wisely after a thorough process of shared decision-making.

This drive for patient engagement often fails to recognize one important truth: Our healthcare system inadvertently, yet potently, discourages engagement. It ignores the fact that the patient is already the most engaged person in healthcare. The patient bears the disease, the pain, the scar – and, ultimately, the bill. In our search for greater engagement, we must realize what the comic strip Pogo said years ago – “we have met the enemy, and he is us.”

As physicians, we expect patients to bring test results to an appointment – because patient information is often not shared throughout our complex and fragmented systems. We expect patients to remember their entire health history, and repeat it ad nauseum as our unconnected systems fail to share. We ask them to recount the complex names of the all the drugs they are taking – and at what doses. And it’s not uncommon for these questions to be asked many times in a single hospitalization, during outpatient visits, and again each time a patient encounters a new caregiver.

The reality is that patients have no choice but to be engaged. They are provided these details in an inefficient way that causes a lot of frustration, worry and fear on top of already stressful medical concerns. The Office of the National Coordinator for Health Information Technology reports that one in three patients experience gaps in information exchange, which we rely on the patient to solve. I suspect this number is a significant underestimate because we are so used to this level of fragmentation and repetition, that we no longer see it for the system failure it is.

We need to think less about the patient being more engaged, and focus on how we can simplify, encourage and automate engagement tools on behalf of the patient.

People are accustomed to integrated, automated, 24-hour customer service in almost every other industry. How does Netflix know what type of movies you like? By analyzing your watch list and ratings against millions of other records in its database. How does Amazon know what you want to buy – sometimes even before you do? By looking at your purchase history and known interests to predict your next purchase. A growing list of best-in-class retailers remember our preferences, our home address and our personal details – and they are only selling us STUFF.

Yet, when it comes to our most important asset – our health – the consumer experience is dependent on fax machines, scribbled notes, hand-carried print-outs and the memories of those most in need of care. If our healthcare system were to implement the automation, connection and coordination that other industries have used to change the face of consumer engagement, boosting patient engagement wouldn’t be an issue. We would instead be easing the burdens on the very patients we are trying to help.

Patients and their families are desperate for improved interactions and engagement tools. A recent story detailed how concerned parents – who were also engineers – figured out how to hack into their diabetic children’s glucose monitors so they could remotely track their blood sugar levels. Should something so essential to managing a loved ones’ health require it to be hacked to make that data accessible?

There are no technological reasons why these medical devices don’t share data, why hospital pricing is so opaque and why electronic medical records don’t share information automatically with all of a patient’s providers. In fact, the hurdles blocking the path to a more seamless, welcoming and user-friendly healthcare system are old habits, proprietary business models and a lack of patient-centered care.

We have to improve how our healthcare system engages with patients by getting the various technologies used to take care of people talking to each other. Additionally, we need to provide transparent pricing information or we won’t succeed in delivering better individual care, managing population health or lowering costs.

Effective patient engagement shouldn’t require patients to bear the burden of remembering all of their previous treatments or creating their own healthcare innovations to access their patient data. An automated, connected and coordinated system is needed before we can reap the benefits of effective patient engagement. Until we have such a model, we’re simply asking consumers to take too much responsibility for transforming a broken healthcare system they didn’t create – a system that should be serving them, not the other way around.

Joseph Smith, MD. PhD (@JoeSmithMD), a cardiologist, cardiac electrophysiologist and engineer, is chief medical and science officer of theGary and Mary West Health Institute (@WestHealth), an independent, nonprofit medical research organization that works with healthcare providers and research institutions to create new, more effective ways of delivering care.

14 replies »

  1. Great article. If we could simplify this process for patients, I believe we would definitely see better patient engagement. I would love to see data shared between providers/facilities in the future.

  2. Very refreshing article, we need more voices crying out for these changes.

    I really enjoyed this part.

    “There are no technological reasons why these medical devices don’t share data, why hospital pricing is so opaque and why electronic medical records don’t share information automatically with all of a patient’s providers. ”

    It seems the only reasons why these medical devices don’t share data are financial ones. Until there are financial gains, and not losses, associated with greater transparency, we’ll likely see this trend continue.

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  4. Great article that finally points out that patient engagement does not mean shifting the burdens of accessing all their records to the patient. It means making that process transparent so that the patient can engage on their care.

  5. I completely agree that we can and should do a better job being more transparent and patient-centered. And “we” means all of us–health care providers, patients, the engineers who build cool new devices and the software that makes them work, the vendors who market and sell those products (including EHRs), and the regulatory bodies who oversee all of it.

    However, let’s also be clear that Dr. Smith’s Netflix and Amazon metaphors are perhaps a little oversimplified. We’re already starting to make progress using the information we have available in a single information system (EHR) to drive clinical decision support. We’re developing the ability to know what disease(s) you’re going to get and the best way to personalize prevention and treatment of that disease for you (note that prevention comes before treatment). This is equivalent to knowing what movie you want to watch or what stuff you want to buy before you do.

    But we need to go well beyond that. What if Amazon and Netflix shared their data to get a more robust list of your movie preferences? And what if they added in data about your shopping preferences, your zip code, special occasions in your life, who your friends are, and so on, in order to predict the entire guest list, menu and entertainment for your next party (and help you purchase what you need)? Does that concept creep you out a bit with respect to privacy concerns? And if the two companies did try to do that, what happens if Amazon says you love “The Princess Bride” and Netflix says you hate it? Whose algorithm wins?

    Our task is to integrate and interpret data not just in one system, or even in one set of interfaced systems in a single organization. We need to find a way to share data across disparate systems AND make logical sense of it.

    And we have to deal with different languages. Have you ever seen someone from rural Alabama try to carry on a conversation with someone from London and someone else from Vermont, all of whom ostensibly speak English?

    And we have to deal with differences of opinion. Is that foot pain due to gout, diabetic peripheral neuropathy, spinal stenosis or osteomyelitis (or multiple of the above)?

    And we have to deal with privacy concerns. What if a patient wants some but not all data shared? Who gets to decide the security rights, and what are the associated risks of concealing some information?

    I’m anxious to see these problems solved. But I think health IT is in many ways a bit more complicated then moving dollars from your US bank account to Euros in your German bank account. We need a lot of smart people and a lot of compromise if we’re going to succeed.

  6. Example of patient engagement and “help”: professional w h/o PE and DVT on xarelto failed to be reviewed by “provider”. After 2 weeks of a sore toe, and multiple shoe adjustments and self enlightened internet care, an ER visit revealed osteo and an abscess requiring parial amp.

  7. Sing it, brother. Like the old bacon and eggs metaphor, the medical-industrial complex (the chicken) is involved, but the patient (the pig) is fully committed. However, our commitment has been either ignored or derided (“don’t Google, you’re too stupid to understand the results”) by the “professional” chicken-wing of the transaction.

    A real HEALTH care system would welcome input from the average human, including data from stuff like Fitbits and other wearables. Heck, even diabetes pumps don’t talk to anything but the EHR, so my buddies in the ‘betes community have to figure out hacks to use their own pump data for anything meaningfully useful to THEM.

    Patient “engagement”? We ARE engaged. But the language and outreach from the system side has more than a whiff of paternalism, still. Most patients with chronic diseases know more about their condition than many of the clinicians treating them, but just try saying that out loud in most clinical settings.

    LET. PATIENTS. HELP. Help retool and redesign the whole system. Otherwise, it’s just another round of attempting to put lipstick on a pig. And, as mentioned above, the pig might have different outcome goals.

  8. Lisa, it actually has to go beyond Amazon & Zappos, because health care has to solve the ‘group engagement’ riddle.

    That is, how to enable people who happen to be patients to intelligently grant permission to whomever they want to access their health info in the interest of helping them nurture it (and of course to retract that permission as they see fit).

    The consumer as an enabled single combat warrior is, let’s face it, an idiot. We’re not talking about buying shoes here.

  9. Joe – Brilliant and salient points, as always.

    Instead of giving patients responsibility for managing and preserving their health we’re giving them responsibility for cutting through the bureaucratic red tape and closing the gaps in care. That process leaves us so weary that managing our health feels daunting. Patients are engaged. It’s just that many, like my aging parents, are too busy solving the problems of the system to have the time and energy to focus on health. In fact, my mother told me the other day that she didn’t have time to go walking anymore, because she and my father had too many doctor’s appointments. And then we wonder why we don’t have better outcomes. Go figure!

  10. Well written and good sentiments, Dr. Smith. Thank you.

    What the patients also need and what their agents need (us) is a shift in power. Our tools, the hospitals, the insurers–and now the government–have too much and every progressive, economist and entrepreneur is jumping in to try to save the sector….and make a little money while they are at it. The Sherpas and porters to Everest are eating all the food, not the climbers.

    The root causes of today’s dysfunctions are: 1. Third party payers. Money should flow from insurer through patient to doc/provider. Docs need to compete with costs of procedures. Ditto hospitals. 2. Asymmetric tax deductibility so that employers and employees are favored. Everyone needs to be shopping for plans on an equal footing. 3. Darling v. Charleston Community Hospital caused hospitals to assume the power to insure quality of medical staff. Too much power to hospitals. See Annals of Health Law, Vol 14, Issue 2 Summer 2005, Article 7. http://lawecommons.luc.edu/annals 4. Failure of U.S. Patent Office to insist on novel, unintuitive and USEFUL in their grants of years of monopolistic protection. Market sales begin too soon before utility is proved. 5. “Justice” was added to Hippocratic Oath without our consenting discussion. We are made responsible for reducing costs and fairness to all over beneficence to our patient. 6. Anti-trust has kept doctors isolated and unable to influence changes for patients. We need to fight with patients over charges and obscurity of bills and constant badgering for POLST compliance. [Anti-trust is, of course, ignored in ACOs.]

  11. Joe, great article. As the healthcare system heads more and more towards retail, it’s going to have to feel a lot more like Amazon and Zappos if ccmpanies are going to make it to the next decade. Can you imagine if consumers were expected to remember all of their financial transactions and fix the broken connections between banks? Doesn’t happen. Shouldn’t happen in healthcare either.

  12. “Until we have such a model, we’re simply asking consumers to take too much responsibility for transforming a broken healthcare system they didn’t create – a system that should be serving them, not the other way around.”

    Beautifully stated. Unfortunately, also not going to happen anytime soon. Too many people and too many organizations are vested the status quo. There is too much money to make by getting while the getting is good.

    The most important thing American consumers can do is start to treat the healthcare industry in an adversarial manner. I don’t mean engage in more litigation, but just stand up for themselves and simply start to demand excellent customer service. That ought to be the baseline of the interaction between vendors (healthcare providers) and their clients (patients and families). The reality is our healthcare industry sucks and it isn’t getting much better because there is relatively little money to be made in doing so.

    My own and my family’s engagement with the industry: use it as little as is humanly possible and make very, very clear that we do not suffer fools gladly.