I’ll probably catch a lot of heat for this post, but this has to be said.
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?
Hey John, I’m on it like white on rice 🙂
This post is from Ty a proud member of the ONC Joint Interoperability-Experience-Task-force. I serve as lead for the committee team that’s focused on policy, technical needs, and Public-Private Approaches to “Patient Initiated Data” we’re discussing a similar use case to your post concerns due for public hearing very soon. Please join our next task force monthly call May 6th 1-2:30pm EST, url weblink provided. We’d love to have you listen and voice your thoughts on patient portals to the group.
More to come… Thanks!
Thanks Ty for chiming in and please pass along further details regarding the May 6th call to john at chilmarkresearch dot com
Cheers,
John
Institutional-centered health records are unsustainable and may already have peaked and fiddling with the 12-health related portals that I already have (and I’m quite healthy) is not going to fix a broken model.
It’s time to start thinking in terms of patient-centered and patient-owned health records that various caregivers either sign-into directly or that connect to the caregiver’s institutional system _symmetrically_ via FHIR. Right now, FHIR development is still focused on the institutions instead of the patients and congressional action will be required to update HIPAA to outlaw data blocking, but having my most personal and essential data out my control in different portals simply does not scale for me or for my caregivers.
Agree Adrian – the current structure simply does not work. What I find challenging though is how do we get patients/citizens to carry enough to actually take ownership responsibility?
We are hard-wired to transact based on information we have available to us. What transactions can we undertake once we have taken ownership of our records? How do we use our records to make something happen – where is utility? This may be one of the tougher nuts to crack in all of this as most of us simply do not care until something goes wrong.
Admin, if not okay please remove!
Our facebook group “selfless” is spending this month spreading awareness on prostate cancer & research with a custom t-shirt design. Purchase proceeds will go to cancer.org, as listed on the shirt and shirt design.
Thanks
http://www.teespring.com/prostate-cancer-research
As we have all been touched by cancer – will leave this comment up for a brief period.
Spot on! My two cents:
1) The health literacy community operates on the principle that understanding is the prerequisite for engagement. You touch on this above. Co-designing with patients is a sure way to increase the likelihood that end users will understand the site (content and navigation).
2) Until portals reflect the reality that health care delivery is only one driver of health, I suspect they’ll remain peripheral to patient engagement. In order to be truly engaging, portals need to reflect the patient’s total health picture: state of food, housing, and economic security, as well as needs, values and preferences. Without these components, the power of clinical data – and portals – is severely limited.
Thank you Jennifer for the additional inputs as indeed, without personalization that addresses the others contributors to a citizen’s health and well-being, patient portals will only provide a modest slice of the health experience.
Halleluja!
After running an EMR for 12 years, and saying this for at least 5 years, someone else echos most of my sentiments.
I would add: It’s foolishness to think DOCTORS are actually sending records, checking other doctor or ER visits by patients, etc. That is done by support staff, who are depended on to deal with what they can and send what needs MD review up.
There is a filter, there has to be, providers have too much to do, and they have to actually deliver patient care in there somewhere.
Love the feedback Sue Ann. To receive such from a practicing clinician is true validation!
Hi John,
As I read your post, I am reliving my last 4 years! As cofounder of MDCapsule, a health platform that enables a consumer to access their healthcare through one login, one “portal” as opposed to the fragmentation that consumers currently face, I have been asked more times than I can repeat by HCOs and industry leaders..”who’s gonna pay for all this added consumer engagement, since the consumer is unwilling to”. I agree that “version 1.0″(as I call it) of portals is dead and the need for better consumer engagement and “activation” is needed, however you did not mention what keeps HCOs and providers from improving on the present portals…because in that lies the greatest challenge. There is currently a lack of financial incentive to do more…as long as HCOs and providers do the bare minimum required on them by payers/regulators, they are unwilling to do more.
Thanks for chiming in Nathalie.
To those HCOs that do not see a financial incentive, I counter with:
Are you in a competitive market? If yes, then how will you compete for business, best quality, lower prices, best overall experience? Re-architecting the patient portal to truly be of use has the potential to significantly enhance engagement and stickiness of the institution.
If in less competitive markets – and for that matter all HCOs – the migration to risk-adjusted payments and value based reimbursement will necessitate HCOs to have their patient, esp. those with chronic conditions or at risk of contracting such, to take a more proactive role in their care. HCOs need to begin today with creating and testing such systems as CMS and the follow-on commercials have all sent clear signals to market that value based reimbursement is the future!
I’m perhaps one of the last remaining fans of the patient portal, having led Kaiser’s efforts from the outset. I agree that today’s versions don’t provide key features (interoperability, peer support, more of the data, etc.). However, I view today’s portals as V1.0. For the ones that are working and serving millions, great value is being derived by patients and their physicians. I can’t imagine not being able to email my different providers with quick questions, or see my lab results appear before I even get home (today’s experience) or click on a test result to learn more about it.
The keys to driving adoption and therefore value are not secret. Usability, reliability, relevance, secure/private and integration with care all matter. I see more examples of poorly designed portals that are then neglected than seeing continued investment into helping them evolve and meet patient needs. I believe we are giving up too quickly; and for interoperability we’ll need many of the basics found in V1, similar to how mobile depends on similar back end capabilities.
All great points Anna-Lisa. You and the work you and your team did at Kaiser is still far ahead of most HCOs today. And that is a bit depressing.
As a vertically integrated system, KP saw the clear need, had the incentive to promote patient activation. Unfortunately, the rest of the industry did not – there was no perceived value, simply another box to check for MU attestation. But this may come back to haunt these same HCOs as despite the lip service to patient engagement, exceedingly few are truly investing to make the patient portal a truly engaging, inviting and educational experience.
Here in Boston, the big daddy HCO, Partners is using MyChart. Sadly, unlike KP who uses MyChart for engagement, Partners sees MyChart as their portal for payment collections. I’ve never once received notification of labs, recent visit notes, nothing. The only time I am contacted is when there is a billing issue. Clearly, Partners could care less whether or not I’m “engaged” they just care whether or not they will get paid.
As you rightly put it, there are no secrets to engagement, there is simply the question of whether or not the institution sees it as a priority and puts the resources behind it to make it work. Today, too few HCOs are willing to make it a priority beyond a PR campaign.