OP-ED

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.

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Fish Oil
Guest

Very interesting topic, great article indeed.

Rachel
Guest
Rachel

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.

Tyler
Guest

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.

Hirdey Bhathal
Guest

Dr. Smith, we have addressed almost every single issue that you have raised in this article including sharing medical information and caregiving in most secured way. Our application is completely free to the patient, provider and payer and we do not put advertisement or sell data. So give it a try, you have nothing to lose and drop us a line if you have a question. There are plenty of videos about our application to learn more about it http://www.zibdy.com.

@kenrosenfeld
Guest

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.

Howard Levy MD
Guest
Howard Levy MD

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… Read more »

Whatsen Williams
Guest
Whatsen Williams

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.

Mighty Casey
Guest

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… Read more »

Anna McCollister-Slipp
Guest

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… Read more »

William Palmer MD
Guest
William Palmer MD

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… Read more »

Lisa Suennen
Guest

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.

civisisus
Guest
civisisus

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.

Vik Khanna
Guest
Vik Khanna

“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… Read more »

@BobbyGvegas
Guest

This is the crux of Vik’s new book, which I have just finished and will be reviewing.

http://www.amazon.com/Your-Personal-Affordable-Care-Act-ebook/dp/B00OZSV0HA/ref=sr_1_6?ie=UTF8&qid=1417794547&sr=8-6&keywords=Khanna

PS: no one will EVER confuse Vik Khanna with someone who “suffers fools gladly.”