When is a patient not a patient? More often than you think

I have been conducting an informal test for the past year and a half.  And while it has not been a full statistically-significant clinical trial with test and control groups, and “double blind” testing methods, the results have been striking…

The way this test works is that when I meet someone new or reconnect with someone I have not seen in a long time, I ask them to describe themselves and then listen carefully to the answer.  Some clear patterns emerge:

• It’s most common for people, and particularly my American friends and colleagues, to identify themselves by their occupation…as a business person, doctor, software developer, artist, etc.
• Many people identify themselves as parents, spouses or family members in relation to other members of their extended family and social networks
• Some people will throw in identification around passions and interests, such as being an avid sports fan, fisherman, classic rock devotee, or obsessive collector of shoes

What is notably absent from these descriptions is self-identification as a patient of any kind, and I have asked this question of many people who later proved to be wrestling with serious chronic conditions like cancer, heart disease, diabetes, and even MS.  The truth is that even very sick people do not consider themselves patients except during relatively brief periods when they are in the hospital or the doctor’s office.  Instead, we humans tend to think of ourselves as employees, friends and family members, enthusiasts of our favorite activities, and even consumers.

Why is this important? Because in the Healthcare world we are belatedly waking up to the reality that patients are a very important stakeholder in the healthcare system.  “Patient engagement” and “Patient-centric care” are phrases used with increasing frequency, including extensive discussion at the HIMSS conference in March.  As we make the shift from fee-for-service to value-based care and reimbursement models, we NEED patients to take a greater role in supporting their health and well-being…whether that means following through on prescribed therapy to avoid preventable readmissions, or observing better diet and exercise to reduce the risk of chronic health problems down the road.  A slew of new tools and services are emerging to share health information with patients, monitor their condition and prompt them to take beneficial action at the right time.

But there is a major disconnect if we approach people as patients when they do not consider themselves to be patients. Unlike a “patient mindset” of prioritizing health and recovery over all else, in reality people constantly make trade-offs between a number of different competing goals and objectives tied to their self-identity.  What clinicians sometimes see as an inexplicable lack of adherence to treatment (fewer than half of patients take their medications as prescribed) is often the result of the patient’s attempt to resolve the cognitive dissonance between being treated like a patient when they do not feel like one.  For example, “Why should I, businesswoman and mother of two, monitor my blood sugar levels meticulously three times a day when I otherwise feel fine and can still keep on top of my golf game?”  The usual clinical response of increasingly urgent and frequent behavioral reminders just furthers cognitive dissonance instead of resolving it, typically causing the patient to “tune out” until a health emergency aligns their self-perception with the clinician’s—if only for a little while.

The Health IT community, in particular, is in danger of repeating early electronic health record (EHR) mistakes.  With EHRs, designers initially ignored preferred doctor workflow, resulting in years of conflict and misery between doctors and their EHR systems.  Patient health technology that fails to consider the individual’s normal lifestyle and workflow will meet a similar fate.  People do not want to carry around bulky devices with rounded corners in “hospital blue & white” because it calls attention to the fact that they are a patient in a world of non-patients.  They chafe at digital tools that require extensive and inflexible logging of daily activities because the time it takes interferes with the occupation and activities that are central to their self-identity.  They resent therapy regimens that conflict with their normal preferred schedule.  Like doctors with early EHRs, they are being asked to adopt an unnatural workflow, and that is extremely frustrating.

At least part of the solution is to take a page from the consumer electronics industry and build flexible and consumer-centric tools that people want to use but which still follow clinical guidelines.  Five specific lessons from the consumer technology experience include:

1. Where possible, patient-centered healthcare devices should look like consumer devices, (to avoid patient stigma) and leverage smartphones or existing consumer IT that are already an integral part of people’s lives. Apple’s new “CareKit” toolbox for app developers supports data sharing with physicians and should be a significant step forward in this area.
2. Allow users to set preferences on how to engage with their health, such as a preferred time for regular daily health activities. Empowering them to make these types of decisions reduces the feeling of helplessness that stigmatizes being a “patient.”  While it is true that some people may choose to turn off valuable clinical features, losing some functionality is preferable to loosing engagement altogether.
3. Personalize and contextualize health metrics and recommendations. Rather than the standard reporting of a lab result and a generic clinical range, display current metrics relative to individualized target ranges, clearly explain what each metric means for health in consumer terms, and most importantly explain WHY the target range is what it is and why it matters. Financial firms do this all the time with complicated concepts like investment return, management fees or retirement savings calculators, and this context helps keep investors engaged.
4. Provide rapid feedback, where possible, to help patients see the results of their decisions. Humans are terrible at trading off near-term actions against long-term results, yet most healthy behaviors ask them to do exactly that. Highlighting and sharing leading indicators of health like weight, activity, blood pressure or A1C on a daily or weekly basis gives actionable feedback.  Part of the reason step counters are so popular is that consumers get near real-time feedback on a metric that they can control, which is (at least notionally) a leading indicator of wellness.
5. Gamification is a surprisingly effective way to keep people engaged in habitual activities, and it takes surprisingly little “reward” to encourage people to keep playing. Setting achievable near term goals as well as long-term goals reduces perceived hurdles and keeps patients in the game.

One noteworthy healthcare product that takes a number of these lessons is Health Assist by Adherence Solutions, which I came across at the HIMSS conference.  The product provides medication and activity reminders to patients with chronic conditions like Diabetes, and since patients confirm follow-through it allows their providers to monitor adherence and manage the full population from a central portal.  Health Assist reports more than twice the adherence improvement of average adherence programs by meeting the consumer on their terms:

• Use existing consumer tools – The messaging solution works with a number of different communication channels, including: 1) a digital pill bottle cap that lights and makes noise, 2) smartphone, 3) feature phone (non-smart mobile phone), 4) landline IVR, 5) text, 6) email, and even 7) a stand-alone “smart watch” supplied with the program that looks like a consumer product. The “smart” channels offer more features, but that functionality provides no value if an individual isn’t comfortable using new technology.
• Allow personal preference – In addition to selecting their preferred communication channel, patients can pick the time each day that they would like to be reminded to take their medications, and the level of “encouragement” versus “enforcement” in the messaging varies based on what works for an individual.
• Personalize and contextualize messaging – The messaging focuses on short, actionable reminders and suggestions delivered at a time that is meaningful for the individual patient. Many communication options also support links to further information to contextualize why each action is being requested, and the “smart” channels collect patient feedback on adherence barriers to maintain a two-way dialogue.
• Provide rapid feedback – The platform escalates issues in a timeframe relative to the action that has been missed. For example, failing to take a daily medication gets escalated within hours whereas failing to schedule a quarterly doctor visit may not begin escalation for several days.  Most patients get at least some form of daily feedback that they are on the right track.
• Leverage Gamification – In addition to the feedback surveys and escalation reminders which are a subtle form of gamification, the platform can be set up to offer CMS-approved rewards for actions completed as an explicit gamification of adherent behavior.

The medical world tends to look down on consumer health and fitness applications as less serious and rigorous than their clinical cousins.  It is true that historically the clinical validation bar for consumer health products is lower; however, this is improving rapidly given faster innovation cycles in consumer products.  Plus, clinical validation is only valuable if you can get people to use the tool.  As patients become a more integral part of delivering successful value-based care, the clinical healthcare industry will benefit greatly from meeting consumers on their own terms.