It is time to accept that the patient portal, as currently architected, is a complete dead-end.
Our national efforts to promote patient portals through meaningful use requirements has created a cluster f*ck of countless individual portals propped up by physicians and health systems across the country, county, and city that do not link, do not share, do not readily allow patients to get a comprehensive view of their health history and status. It’s a mess.
Adding insult to injury are pronouncements by others that indeed patient portals are the latest and greatest and that a vast majority of the population will be using these portals by 2020.
Sorry, just aint’t gonna happen.
But I’ll add a caveat – maybe people will register for a portal, maybe they’ll visit it at a clinician’s urging (after all, healthcare organizations have MU attestation numbers to hit) but actual usage/activation is very unlikely. We as an industry just have not done a good job making these portals valuable enough to the patient – or for that matter the clinician.
And then we have the well-meaning patient advocates screaming “give me my damn data.” Well that is fine and good – people do have a right to their data and it should be giving freely to patients, no strings attached. But then what? A few folks may become “self-empowered,” but that will be a very select few. The majority of patients aren’t going to be as health-literate as those of us working in the industry and will need guidance and assistance – someone who can walk them through their record, explain their labs, maybe provide some educational content to further the patient’s knowledge, etc. – to truly educate the patient on their current health status. Once that is done, then one can move to activation.
Time and again, when people ask me what I do for a living, we eventually get around to what is happening in healthcare, the frequent impersonalization that has resulted from physicians staring at a computer screen and not into the patient’s eyes while they access medical records or patient portals. In all these conversations, I can never recall ever having someone talk positively about their portal experience.
So what can be done?
Here is my 12-step program:
- Admit we have failed – today’s rendition of a patient portal does not engage anyone (except maybe a policy wonk).
- Acknowledge that lack of data liquidity (interoperability) hinders a patient’s ability to see their full record.
- Come to terms with fact that simply providing a digital filing cabinet is of little use to anyone.
- Accept that patients and their caregivers deserve better – it is a business imperative as we move to a more consumer-centric healthcare system.
- Invest resources – not just $$$, but talent and follow-thru to deliver something patients will actually want to use.
- Adopt a design-centric approach to thinking “outside the box” and creating a new patient experience with a strong focus on activation.
- Engage clinicians as to the critical importance of patient engagement and train them on the tools available to the patient.
- Pay staff to assist patients in understanding how to use the portal.
- Allow patient an ability to customize their portal experience and annotate their record. Also, give them access to the complete record, including physician notes.
- For large HCOs, provide capability for self-forming peer groups of patients to share experiences similar to Inspire or PatientsLikeMe. Provide links to other peer groups if you cannot stand one up.
- Provide patients access to a curated, educational library of content, including articles in medical journals, which are cost prohibitive for most lay people.
- Never consider the patient portal a static environment. Continually innovate. Look for new ways to engage the patient (and clinician). Bring in partners that can add additional features and functions to the portal. Begin the transformation to thinking of this not as a patient portal – but a Collaborative Health Record (CHR).
While many now point to such things as APIs, HL7’s FHIR and other technologies as being the savior to truly becoming patient/consumer-centric that trickles down to the patient portal – this completely misses the point. This is not a technology issue. It is simply an issue of willingness by both provider and patient to truly collaborate around the shared medical record. This requires a cultural change, and cultural change requires strong leadership.
Now who is willing step forward to play that leadership role?