The Affordable Care Act Will Fail Without Patient Engagement

What’s behind the recent EHR public relations blitz and our passionate debate in The Health Care Blog? It’s fear for the Affordable Care Act’s future. Oh, the ACA can weather political challenge in the short term, but in the long run, only health cost containment will matter. EHRs are the ship that institutions are counting on to navigate payment reform and, from the institutional perspective, physicians and patients are just along for the ride. From the citizen perspective however, cost containment will be seen as rationing unless patients and physicians are appropriately engaged in the most costly decisions.

The impact of yet more regulations, such as Stage 3 Meaningful Use, could be too late to save the ACA. For now, the administration and those of us that hope the ACA succeeds must work to shift EHR vendors and their institutional customers toward patient engagement using the tools of policy guidance, public relations and federal procurement.

First, a crash course in health economics. If you have a few minutes, read Accountable Care Organizations: Can We Have Our Cake and Eat It Too? by Jessica L. Mantel. Otherwise, just struggle through the next two paragraphs summarizing why EHRs are the lynchpin of health reform via the ACA.

Cost containment requires either cost controls or a shift away from fee-for-service payment. The ACA is based on accountable care as an alternative to fee-for-service. Accountable Care Organization (ACO) is shorthand for the new health care payments regime. By paying ACO institutions instead of individual service providers, health insurance companies and Medicare provide direct economic incentives to reduce waste, lower costs and, if we’re not careful, withhold needed care. An ACO is by definition an organization or institutional construct.

The EHR is is not the Jedi knight’s lightsaber, it is an institutional tool designed to bind the individual service providers into the Federation’s collective. Not surprisingly, patient engagement is an afterthought.

Mantel’s paper examines the structure of ACOs and the reasons why we need to be careful that ACOs don’t withhold needed care in their struggle for a share of what is currently a bloated market that’s costing each US citizen some $3,000 more per year than anywhere else in the developed world. Simply put, ACOs will try to reduce costs, ration care and overstate quality. ACOs, after harvesting the easy savings from “low hanging fruit” such as non-essential hospital admissions, will turn to care coordination and rationing. Care coordination is wonderful but it costs money and will reach diminishing returns as well. Rationing will be moderated by added ACO regulation and independent quality measures. For their part, ACOs will leverage their scale to reduce competition and impede independent quality measures. EHRs are pitched as essential for care coordination but they are purchased as a strategic tool for gaining share of shrinking markets.

Patient engagement, from a health economics perspective, is incidental in care coordination but essential in avoiding the perception of rationing.

The book on patient engagement is yet to be written. EHRs still treat patient engagement as a liability and state health information exchanges (HIEs) are still being designed without any patient engagement at all. (Opt-in and opt-out is still as far as they go.) Both EHRs and HIEs still perceive strong privacy principles and fair information practices as obstructionist.

The path to health reform in the age of unlimited connectivity and mobility cannot continue to bypass the patient. EHRs are an institutional tool and they are unlikely to be either the doctor’s or the patient’s lightsaber regardless how many federal regulations, certifications and billions of dollars we throw at them. Patients and doctors need our own Internet-age tools built from the ground up for privacy and patient engagement. Let’s start by making sure our data can be liberated from the various EHRs via Blue Button Plus and that every federally certified HIE includes provisions for a patient-accessible EHR Record Locator Service. These are the foundation of patient engagement and essential to the success of the Affordable Care Act.

Adrian Gropper, MD is Chief Technical Officer of Patient Privacy Rights and participates in Blue Button+, Direct secure messaging governance efforts and the evolution of patient-directed health information exchange.

24 replies »

  1. Thank you for the great and informative article. I believe a lot of people don’t understand the Affordable Care Act and what it all entails, and engaging them will help many in making informed health decisions.

  2. @Jonah’s question about the role of EHR is partly addressed by Peter Elias MD here http://engagingthepatient.com/2013/07/23/on-the-road-to-shared-office-visits/ as he describes the evolution of open notes in his practice. Although that’s still an EHR-centric perspective, his opening paragraphs point out the vision of a patient-centric perspective.

    EHRs are only one of three parallel classes of health IT systems – the institutional one. The second class are analytical systems designed to compare institutions and individual doctors for quality and payment purposes. The third class are clinical coordination systems designed to directly serve the needs of the patient such as PHRs and various apps.

    As the limitations of EHRs become apparent, physicians and patients will increasingly look to the analytic and patient-centric systems that are much more likely to be responsive to their needs.

  3. This article has generated very interesting and captivating commentary. So I have a few questions that I want to toss in the pot. An interesting analogy of ‘Physicians can be agents’ was brought up and naturally made me wonder How is the average patient (consumer) supposed to know if they are being ‘misrepresented’? Wouldn’t the EHRs alleviate that uncertainty and produce a more trusting patient-doctor relationship or would it further expose physicians desire to increase their earning potential?

  4. We agree! Patient Engagement is indeed essential for the ACA. That’s exactly why we created the iCoverageGuide™ and the user testing showed scoring in the high 90th percentiles even with monolingual Spanish users and those who had never used a mobile device. However, all attention seems to be on EHRs and ACOs.

  5. “Physicians can be agents of the service provider, the patient, or both. In many cases, it makes sense for physicians to be agents of the institutions – captains of the provider ship, if you would. In other cases the physician is purely an agent of the patient as in some concierge practices that are privately paid and offer mostly advice to the patient. We need health IT that supports both kinds of practice in order to avoid self-referral conflicts.”

    Agree with Adrian Gropper on above

    Dr. Rick Lippin

  6. The analogy will only take us so far since in healthcare we’re dealing with third-party payment and outcomes are much more difficult to measure.

    The self-referral I’m talking about is a doctor ordering (or not ordering) services that they or their employer provides. This is either a conflict of interest or rationing depending on whether the incentive is for more or less commerce.

    Physicians can be agents of the service provider, the patient, or both. In many cases, it makes sense for physicians to be agents of the institutions – captains of the provider ship, if you would. In other cases the physician is purely an agent of the patient as in some concierge practices that are privately paid and offer mostly advice to the patient. We need health IT that supports both kinds of practice in order to avoid self-referral conflicts.

  7. Fascinating analogy to lawyers and accountants, as it reinforces the market-driven stereotypers who say ‘just let the market work and everything will be OK.’ Certainly we ‘engage’ those professionals when we hire them. But do we scour the web to answer for ourselves the questions we pose to them? I’d guess very few people do. Medicine is most assuredly not law or accountancy and is not subject to the same market correction mechanisms.

    I guess I don’t understand how you’re seeing medical care. Is self-referral anything the patient does which isn’t approved or ordered by their gatekeeper? How does accountable care become a prescription for self-referral? Seems to me that accountable care would reduce self-referral, as the physician, not the patient, would be accountable. Can you clarify?

  8. That many patients are passive or uninformed is not the point. Most people are passive and uninformed about taxes and legal contracts but we have a class of independent licensed professional advocates called accountants and lawyers that many people engage as independent advisors and advocates.

    My definition of patient engagement includes both the patient and the patient’s independent physician. Self-referral is a well understood problem and typically associated with high costs and unwarranted procedures.

    The central point of this post is that the ACA will fail if accountable care becomes a prescription for self-referral.

  9. Dr. Ley –

    I understand and appreciate your perspective.

    I think it’s also interesting to note that on UnitedHealth Group’s most recent quarterly earnings conference call, one of its executives stated that the two most significant issues that come up constantly in discussions with employers are affordability of premiums and patient engagement. Five years ago, that probably wouldn’t have been the case when there was more employer emphasis on just trying to keep employees happy with their health insurance and healthcare.

    For employers, though, patient engagement has more to do with participation in wellness initiatives, filling out health risk assessments, getting smokers to quit, overweight people to lose weight and those with high blood pressure or high cholesterol to take medications that will bring those numbers down and make appropriate lifestyle changes like improving diet and exercise regimens.

    In interactions with doctors, way too many patients are passive. They just do whatever the doctor says or recommends and are reluctant to ask questions especially if they suggest resistance or opposition to whatever the doctor wants to do. Too many also think more care is better care and more expensive care is better care. This last point is one where doctors can have a positive impact by not only telling patients that they are mistaken but that they would opt for less care and would go to a less expensive hospital or specialist if they needed similar care for themselves.

  10. I would argue that patient engagement is critical. An engaged patient would understand why you didn’t order that extra test. For a long time we’ve known that patients who are engaged in their own care are far less likely to sue. Defensive medicine is a problem, but with evidence-based guidelines the defense will become easier; the doctor will be following standards rather than making a well-educated guess, guesses being much more likely to engender scrutiny than following a standard.

    Price transparency is great. In theory. Quality transparency would be nice. They both have problems. But an engaged patient would then know why you’ve sent them where you did (not only better, but cheaper too!) and accept it much more readily.

    Evidence based guidelines are just that: guidelines. Often a test or procedure will be deemed necessary by the doctor in spite of the guidelines. It’s not reasonable to ask the patient to pay for something the doctor thinks is necessary. Now if the doctor doesn’t think it is, and the patient does, then asking the patient to pay for it might have some merit.

  11. I think that qualifies as ‘buy-in’ and I’m all for it. In my view that’s not patient-directed care.

  12. I wonder where and how defensive medicine fits into the patient engagement issue. For example, suppose there is a test or tests that the doctor could order to rule out extremely rare conditions but wouldn’t order if he were treating a family member or friend and paying the bill himself. Or, maybe there is a test that even if it came back positive, it wouldn’t change his treatment strategy and recommendations. If he/she had safe harbor protection from failure to diagnose lawsuits if evidence based guidelines and protocols are followed, these tests wouldn’t be ordered and patient engagement wouldn’t be necessary as it relates to those particular tests. How big a deal is defensive medicine in contributing to high healthcare costs in the U.S.?

    Another huge issue that contributes to excess healthcare costs in this country is that prices per service, test, procedure and brand name drug are significantly higher than in other developed countries. Robust price and quality transparency tools available to both patients and referring doctors could enable both to identify the most cost-effective high quality providers in real time and direct more of their business to them for care that can be scheduled in advance. This has nothing to do with patient engagement either.

    We could also lower costs by limiting what hospitals can charge insurers and the uninsured to some reasonable percentage above the Medicare rate for care delivered under emergency conditions, which, by definition, cannot be scheduled in advance. Patient engagement has no role here either.

    Where patient engagement is relevant like the PSA test discussion, if evidence based guidelines don’t call for it, at the very least, the patient should pay for it out-of-pocket instead of requiring Medicare, Medicaid or private insurers to cover it.

  13. For the last 6-9 months, I have given patients full on-line access to the progress notes, radiology etc in my office. On rare occasion a patient will find an error or disagree with a note. I do not believe that giving patient’s access to their progress notes has made a meaningful difference in their care.

  14. Excellent post, thanks. However I fear it speaks of a small slice of health care consumers (oh, I’m sorry, there I go parroting management-speak again–I mean patients). A surprising number of patients have other things to do and don’t really want to be ‘engaged’, thank you very much. Is the post another nudge towards that phantom of purportedly cost-saving “patient directed care”, or do you just want to encourage buy-in? Buy-in is great. As for direction, if we have huge amounts of information and training and can’t figure it out, how can they (viz. prostate cancer screening).

    Also, am I missing something? From your paragraph 6:
    “Simply put, ACOs will try to reduce costs, ration care and overstate quality. ACOs, after harvesting the easy savings from “low hanging fruit” such as non- essential hospital admissions, will turn to care coordination and rationing.”

    In his seminal article “The Cost Conundrum”, I think the marvelous Dr. Atul Gawande showed pretty clearly that there is a HUGE amount of low-hanging fruit to be picked. Bring the McAllen Medicare costs just down to Medicare average, then extrapolate that to the whole country and we’re talking buckets of money saved. Perhaps those of us reading, writing and commenting are already far along the best-practices continuum, and need to remember that ACOs can do a LOT to reduce costs, long before they need to get to “ration(ing) care and overstate(ing) quality.” The first year Pioneer ACO information fits with this perspective. Several of those didn’t do as well as they’d hoped precisely because they were already so efficient that finding more savings was difficult.

    We’re buffing the gems, so to speak; an educational experience, to be sure, but not likely predictive of more widespread application of ACOs. Let’s try and remember the rest of the delivery world.

  15. Physicians sometimes have difficulty separating adherence from engagement. The job of the provider and payer institution is to provide complex services that only institutions can provide. That role also requires and benefits from adherence. Engagement is much more personal. Different clinicians will focus on different sides of this distinction. Engagement is a tool to promote adherence but in some cases this will be overly paternalistic and in others it will lead to mistrust.

    My post is trying to highlight this difference in order to encourage ALL institutions to respect the patient’s right to independent advice as a trust-building measure. Adoption of Blue Button Plus and patient-accessible HIE practices should not have to wait for MU Stage 3 regulations.


  16. EHR tech arose out of billing systems, so I’m not surprised that they’re more about reimbursement than they are about patient/provider communication. In fact, it seems that giving patients information is a big hurdle for EHR systems – as much of a hurdle as easing clinical workflows. Again, it’s cherchez l’argent (look for the money), not look for clinical data. Unless it’s got a billing code …

  17. That’s a very nailing-Jello-to-the-wall concept currently, but I’d define it as “the patient is invested in participating in his/her care” – then the clinical side of the conversation needs to meet that patient where s/he is, and help said patient gain best-possible health outcome. It’s a collaboration …

  18. “a voluntary relationship with a physician who works for me when I face powerful provider and payer institutions”

    Hmm. If the physician is paid by either a hospital or insurer, is patient engagement possible?

    Thanks for the response.

  19. Patient engagement is a Rorschach test for whatever you’re selling.

    My working definition is based on analogy with other professional advisory services offered to citizens facing risky and expensive decisions, for example accountants and lawyers. The citizen voluntarily engages with licensed professional advocates when s/he seeks independent advice in dealing with powerful institutions. Patient engagement, for me, is all about enabling a voluntary relationship with a physician who works for me when I face powerful provider and payer institutions.


  20. Well said, and I fully agree with everything said. However,a caveat it is in order. To the best of my knowledge, there is no evidence that “patient engagement” will reduce healthcare costs. For example, A common scenario, which plays out in multiple variations is… 55-year-old male comes in for routine physical. We have a discussion about prostate cancer screening and I explain that guidelines recommend against “routine screen” given the risk/benefit assessment. Despite my conviction that the test should not be done, the patient’s response is frequently: “Lets get the test and then we can decide what to do about any abnormal result.” Once the test was ordered, it is too late.

    I sincerely believe that one of the biggest problems the healthcare system faces is the opinion of most patients and many physicians that the more testing the patient has done, the more likely it is that they will remain health. I don’t see any way to overcome this erroneous assumption.

  21. The HIT landscape landscape under health reform has 3 major markets: provider institutions have EHRs, payer institutions have Analytics and patients and patient advocate physicians need our own Patient Engagement market.

    The main point of my post is that regardless of how much regulation and angst we heap on the institutional EHR market, it’s scope is limited by fundamental economic incentives and the democratization of knowledge in the Internet era.

    Provider institutions that ignore the patient engagement market will be competing with those that lead with patient engagement. There’s no better example of what I’m talking about than Rob Lambert’s post in THCB earlier today.


  22. Adrian,

    Excellent post. I also agree.

    I also agree that the jury is still out whether the power/incentive of Meaningful Use is strong enough to shift EHR’s focus towards true patient engagement and information sharing. It is shame EMR’s were bought and paid for ahead of the shift towards accountable-like reimbursements where the patient is a key stakeholder. The fundamental design for all of health information technologies would likely have been quite different had the reimbursement methodology preceded the software. We are asking today’s vendors to migrate old legacy code in directions never envisioned when the base code was written.

  23. Andrian

    Let me be the first on this blog comments section to wholeheartedly agree with you

    Thanks for your outstanding leadership!

    Rick Lippin