Patient-centered care and patient engagement have become central to the vision of a high value health delivery system. The delivery system is evolving from a fee-for-service transactional payment model to a value-based purchasing model using outcome data and quality improvement and attainment. The Centers of Medicare and Medicaid Services (CMS) and private payers have spurred delivery redesign of networks that focuses on a set of clinical quality measures and patient care experiences along with efficiency measures.
However, the questions we ultimately really care are: “Did I get better? Am I healthier?”
With the advent of Facebook, PatientsLikeMe® and Avado, consumers and patients are sharing their healthcare experiences openly with their support system and strangers with similar illnesses. Our delivery system has yet to leverage the power of patient/consumer reported data in feeding back to care deliverers in the quality improvement cycle.
Clinical quality measures have traditionally consisted of process or surrogate measures and centered on providers and hospitals. As we move toward a system based on value, the measurement system must shift as well. Part of this movement will be utilizing outcomes directly reported from patients and their caretakers and incorporating these outcomes into quality improvement initiatives and payment models. The widespread adoption of standardized and validated patient-reported outcomes measures (PROMs) would accelerate the development of a patient-centered health system. However, new standards; patient-friendly, digitally-enabled instruments; secure portals; and more research will be required to facilitate adoption.
One guarantee in the healthcare sector is that when it comes to personal health information (PHI), there is no lack of issues and pundits to discuss security and privacy of such information/data. If one does not jump up and down bleating on about the sanctity of PHI and the need to protect it at all costs, well then you may be labeled a heretic and burned at the proverbial stake.
Now don’t get us wrong. Here at Chilmark Research we firmly believe that your PHI is arguably the most personal information you have and you do have a right to know exactly how it is used. Whether or not you own it remains to be seen for we have seen, read and heard one more than one occasion – some healthcare providers believe that it is their data, not yours, and may only begrudgingly give you access to some circumscribed portion of your PHI that they have stashed in their vast HIT fortress, or worse, scattered in a number of chart folders.
But where we do differ with many on the sanctity of PHI is that the collective use of our de-identified PHI on a community, regional, state or even national level can give us some amazing insights into what is working and what is not in this convoluted thing we call a healthcare system in the US and needs to be strongly supported. Unfortunately, we do a terrible job as a country in educating the populace on the collective value of their data to understand health trends, treatments and ultimately ascertain accurate comparative effectiveness. This leaves the door wide open for others to use the old FUD (fear uncertainty and doubt) factor to keep patients from actively sharing their de-identified PHI.
Reviewing “The Myth of The Paperless Office” for the New Yorker in 2002, Malcolm Gladwell argued that if the computer had come first, and paper didn’t exist, someone would have had to invent it. Paper, it turns out, is a lot more useful than we typically appreciate.
It occurred to me that perhaps the same might be said of another product we seem to take for granted in the digital age – medicines. (Disclosure: I work at a company that makes them.)
Medicines – you know, those little white pills that everyone loves to critique – are in many cases remarkably effective solutions to very difficult problems; it’s actually kind of amazing how useful some of these products can be. What an incredibly powerful idea – addressing a difficult and complex health problem with a simple pill you can pop before breakfast.
I read a tweet recently asserting that physicians may soon prescribe health apps as an alternative to medications; my initial reaction: good luck with that one. It’s certainly easy enough to envision how magical thinking about the power of health apps will soon be replaced by disappointment as app developers realize something drug makers have known for years: it’s hard to improve health, and it can be very difficult to get patients to stick with a treatment long enough to make a difference.
In May 2008, when the Roper poll asked a random sample of Americans “If your medical records and personal health information, such as test results and doctor’s instructions, were available to you online, how likely do you think you would be to access those records and information?” Sixty-five percent said they were somewhat, very, or extremely likely to access their records. In the February 2009 stimulus bill, Congress asked the Health IT Policy Committee “to facilitate secure access by an individual to such individual’s protected health information” and “… to facilitate secure access to patient information by a family member, caregiver, or guardian acting on behalf of a patient…”
CMS now proposes that in 2014, hospitals receiving the billions of dollars of Stage 2 federal EHR incentive payments must provide patients with electronic access to their hospital discharge information within 36 hours of leaving the hospital. CMS is not only asking hospitals to give patients reasonable access to their own current and actionable health information, but it’s also trying to help patients and families address the wasteful and dangerous rates of hospital readmission and failures in continuity of care that haunt American healthcare. But the American Hospital Association is arguing that “Establishing a web portal or other mechanism to provide patients online access to this magnitude of data is unrealistic and premature.”
The deadline for comments to Stage 2 is upon us and a clear fork has emerged for federal regulators. The cats and dogs here are institutional vs. patient engagement. The institutional fork has been taken by the American Hospital Association. The patient fork is exemplified by the National Partnership for Women and Families. The primary argument is over patient access to their own information. The draft regulation suggests a 36 hour (or 4 days in other circumstances) delay. The AHA wants 30 days. Some patient advocates are seeking immediate and highly convenient access.
The fork in the road for federal regulators, with some $30 Billion dollars of incentives in hand, is whether to micromanage the institutions or to encourage patient-centered innovation. This choice is deeply entangled in the $Trillion realities of payment reform.
The micromanagement of institutions through increasingly complex regulations on EHR vendors, clerical and clinical staff seems like slow torture. We have institutions begging for relief. Large vendors are consolidating their lock-in business model as the barriers to entry into the health information market get higher and higher. Quality transparency is controversial and price transparency is almost unimaginable.
I believe the Health 2.0 community can put to rest any concerns that patient engagement will be difficult by commenting below on how apps they’ve built or seen can help blow away the requirements proposed in Stage 2 Meaningful Use.
In an earlier piece, I asked the question “Will the ONC provide a huge stimulus to Health 2.0 startups?” I touched on how this could be the biggest boost the health 2.0 startup community has ever received. Elsewhere, there has been pushback such as an article in Healthcare Informatics that describes patient engagement as The Least Popular Thing About Stage 2 MU So Far. In particular, providers question the requirement that 10 percent of patients access their data.
I don’t doubt that the proposed requirements will be difficult for some but I hope we aren’t, once again, beset by the tyranny of low expectations. 10% is a strikingly low # when you consider that health items are the 3rd most searched items across the entire population (not just sick people who should be much more motivated on a relative basis). While we know that some people are difficult to engage, it’s a llllonggggg way from 90%.
It’s only difficult (today) because the incentive systems have created a dynamic where providers have become highly skilled at getting as big a bill out as fast as possible. Why wouldn’t they have developed that skill? That is exactly what the flawed “do more, bill more” model of reimbursement has rewarded. The byproduct is they haven’t honed their skills at engaging patients. Having worked with hundreds of providers and dozens of vendors, these are smart and motivated people. I have ZERO doubt that they will rise to the expectations if they are given the chance.
The federal government is on the cusp of leveling the playing field for healthtech startups. Health 2.0 events have shown an unprecedented wave of innovative healthtech startups have developed over the last few years. You can also see them at demo day events that Blueprint Health, Healthbox, Rock Health and StartUp Health host. However, the health sector may be the single most challenging arena for startups.
I would argue nothing would result in population health improvement (while decreasing healthcare costs) more than having greater engagement by patients in the healthcare process. The Office of the National Coordinator (ONC) could catalyze an unprecedented wave of innovation with a stroke of a pen by strong inclusion of patient engagement requirements in the Meaningful Use requirements.
Having high expectations for Patient Engagement will cause healthcare providers to rise to the occasion to solve this critical issue. It’s well documented that three-quarters of healthcare spend is on chronic disease and decisions that drive outcomes are made by individuals (aka “patients”). It’s long been said the most important member of the care team is the patient. Now is the time to transform that from a catchphrase to reality. The ONC can do that.
The biggest potential stimulus ever for healthtech startups
We have seen how Stage 1 Meaningful Use requirements (PDF) have spurred providers into action. By and large, that has meant an infusion of customers to EHR vendors. Legacy healthIT has had very, very little focus on the patient because financial incentives motivated the development of systems designed to get as big a bill out as fast as possible — i.e., there has been no incentive to involve the patient.
Despite a constant buzz around the idea of using mobile technologies for patient engagement, the depth and breadth of these solutions has remained consistently thin and frankly dated. Today, healthcare organizations who are adopting and deploying engagement solutions are focusing these efforts on marketing/patient retention (e.g., simplifying transactional processes such as appointment scheduling, prescription refills, etc., online access to lab results & records) and accelerating payments (online bill-pay). Despite all the talk about using mHealth for care provisioning, our research for the upcoming report that will be released later this month, mHealth Adoption Trends for Provider-Patient Engagement, finds a market that is still in an early, embryonic stage of development.
So why the disconnect between the hype of mHealth for care provisioning and reality? Of the many potential reasons, there are two that are dominant: a lack of solutions with proven clinical efficacy and few financial incentives to drive adoption.
While there is little argument that increasing the interaction between a care team and their patients is a good thing, the best means for accomplishing this feat are still unclear. A year ago, Group Health published results from an internal study testing just what impact this increased communication may have on outcomes and patient satisfaction. What they found comes as no surprise to us as trusting advocates of patient engagement. In this study, Group Health provided patients suffering from depression a relatively simplistic form of engagement wherein patients were able to communicate with their care team through the EMR portal. The results, impressive: antidepressant medication adherence increased 33%, overall depression scores decreased, and satisfaction with treatment improved 61%.
As the Supreme Court debates the boundaries of government’s role in mandating the purchase of insurance, the discussion continues on whether the public or private sector is best positioned to drive market reforms necessary to meet our goals of lower costs and higher quality. As the son of a Phi Beta Kappa neo con who believes government should be the size of a sand gnat and as the husband to a British citizen who loves national healthcare and was born through a midwife, I often find myself lost in a political no man’s land with volleys being exchanged from the right and left. To complicate Thanksgiving dinner further, thirty years of healthcare consulting, including a three-year stint in Europe, hospitalization for pneumonia in the NHS and a tour of duty as a senior executive for a national insurer has left me with my own conflicted convictions about how we might fix our broken system.
On the eve of the Supreme Court determining the fate of PPACA, strong opinions are in full bloom like cherry blossoms along the Mall. In his particularly sharp remarks to government attorneys, Justice Kennedy, considered a swing vote by many, cautioned that Congressional intervention to mandate citizens the “duty ( to buy coverage) to act “ was a slippery slope that sets dangerous precedent and impinges on individual rights. Justice Roberts added, “And here the government is saying that the Federal Government has a duty to tell the individual citizen that it must act … That changes the relationship of the Federal Government to the individual in the very fundamental way.”
Justice Scalia was quick to wade in after Justice Roberts questioning, ” what would be next in the role of the government dictating to its citizens ( if the mandate were to be upheld). “I will tell you the next something else (we will next tell Americans to do) is exercise, because we know that lack exercise contributes to illness.” It seems that this debate is indeed creating odd bedfellows as civil liberties advocates are joining conservatives in warning that the next thing the government will be telling people is that they cannot drink sugary soft drinks or that they have to eat broccoli. It is hard to find a time when a conservative Justice and the ACLU share a common opinion about anything.
The digital identity of patients will come to the fore as the nationwide health information network (NwHIN) takes practical steps to support care coordination, patient engagement and quality transparency. These changes in health care delivery are the essential foundation for cost containment and arguably the essence of Meaningful Use.
Stage 2, as proposed, is a giant step toward care coordination and patient engagement. The focus on Direct and meeting the patient and doctor where they are – on the Internet – rather than where they might be (HIEs and PHRs) is both practical and empowering. But, what does “the patient” mean in a digital, networked system where patient identity is not always based on face-to-face encounters and snail-mail?
I doubt that anyone is arguing for biometric patient passports as a prerequisite for medical consultation.
The practical aspects of identifying the patient online can be seen in light of the Stage 2 mandate for Direct messaging across institutions and with the patient. Let’s imagine a paperless, NwHIN, version of today’s Release Of Information (ROI) request that enables one doctor to send records to an unaffiliated doctor under HIPAA and with informed patient consent.