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June 12 2012

Data in use from public health to personal fitness

Back in 2010, the first health data initiative forum by the Dept. of Health and Human Services introduced the public to the idea of an agency releasing internal data in forms easy for both casual viewers and programmers to use. The third such forum, which took place last week in Washington, DC, was so enormous (1,400 participants) that it had to be held in a major convention center. Todd Park, who as CTO made HHS a leader in the open data movement, has moved up to take a corresponding role for the entire federal government. Open data is a world movement, and the developer challenges that the HDI forum likes to highlight are standard strategies for linking governments with app programmers.

Todd Park on main stage
Todd Park on main stage.

Following my attendance at a privacy access summit the previous day, the HDI forum made me think of a government bent on reform and an open-minded public crossing hands over the heads of the hidebound health institutions that blunder onward without the benefits of tapping their own data. I am not tossing all hospitals, doctors, and clinics into this category (in fact, I am constantly talking to institutions who work with available data to improve care), but recording and storage of information in health care generally retards anyone interested in change.

The "datapalooza" was already covered on Radar by Alex Howard, so here I'll list some of the observations I made during the parts I attended.

Health and Human Services chooses torrents over leaks

Able to attend the forum only on the first day, I spent a lot of it in a session on HHS data sets at Healthdata.gov because I wanted to know exactly what the department has to offer and how the data is being used.

HHS staff at break-out session
HHS staff at break-out session.

Several things impressed me about the procession of HHS staff that crossed the stage to give five- or ten-minute presentations on data sets. First was the ethos of data sharing that the department heads have instilled. Each staff person showed visible pride in finding data that could be put on the Web. A bit of competitive spirit drives different departments that may have more or fewer resources, and data that comes naturally in a more structured or less structured form. One person, for instance, said, "We're a small division and don't have the resources of the others, but we managed to release several data sets this year and one has an API."

Second, the department is devoting resources to quality. I've heard several complaints in the field about lack of consistency and other problems in public health data. One could hardly avoid such issues when data is being collected from hundreds of agencies scattered across the country. But the people I talked to at the HHS forum had ways of dealing with it, such as by requiring the researchers who collect data to submit it (so that trained professionals do the data entry), and running it through quality checks to look for anomalies.

Third, the department knows that outside developers coming to their site will need extra help understanding the data being collected: what the samples represent, what the scope of collection was, and so forth. In addition to a catalog powered by a Solr search engine, HHS provides direct guidance to the perplexed for those developing apps. They are also adding Linked Data elements to help developers combine data sets.

A few examples of data sets include:

  • The Center for Medicare & Medicaid Services offers aggregate data on emergency visits, hospital readmission rates (a major source of waste in health costs), and performance measurement.

  • The Administration for Children and Families has a Head Start locator that helps parents find services, aggregate data on people who apply for Low Income Home Energy Assistance, etc.

  • The Agency for Healthcare Research and Quality has longitudinal data abut spending on health care and its effect on outcomes, based on an annual survey, plus a service offering statistics on hospital treatments, morbidity, etc.

  • The Assistant Secretary for Planning and Evaluation tracks workforce development, particularly in health IT, and measures the affordability of health care reflected in costs to employers, patients, and the government.

Recently, HHS has intensified its efforts by creating a simple Web interface where its staff can enter data about new data sets. Data can be uploaded automatically from spreadsheets. And a new Data Access and Use Committee identifies data sets to release.

So now we have public health aids like the Community Indicators Data Portal, which maps the use of Medicaid services to poverty indicators, infant mortality, etc.

HealthMap, created by Children's Hospital Boston, is used by a fascinating range of projects. They scoop in huge amounts of data--mostly from news sites, but also blogs, and social networks--in multiple languages around the world, and apply a Bayesian filter to determine what's a possible report of a recent disease outbreak. After a successful flu-tracking program based on accepting reports from the public, they did a dengue-tracking program and, in Haiti, a cholera-tracking program.

But valuable as HHS data is to public health, most of it is not very sexy to the ordinary patient or consumer. If you're curious how your Medicare charges compare with average payments for your county, go ahead and mine the data. But what about something immediately practical, such as finding the best hospital for a procedure?

Recently, it turns out, HHS has been collecting and releasing data on that level, such as comparative information on the quality of care at hospitals. So a datapalooza like the HDI forum really takes on everyday significance. HHS also provides the Healthcare.gov site, with services such finding insurance plans for individuals and small groups.

Other jurisdictions are joining the health data movement. Many countries have more centralized systems and therefore can release large amounts of data about public health. The United Kingdom's National Health Service was featured at the HDI forum, where they boasted of posting 3,000 health indicators to their web site.

The state of Louisiana showed off a cornucopia of data, ranging from user restaurant ratings to ratings of oyster beds. Pregnancy risk factors, morbidity rates, etc. are broken down by race, sex, and other demographics. The representative freely admitted that the state has big health problems, and urgently called on developers to help it mine its data. The state recently held a "Cajun codefest" to kick off its effort. HHS also announced five upcoming local datapaloozas in other states around the U.S.

I talked to Sunnie Southern, a cofounder of a Cincinnati incubator called Innov8 for Health. They offer not only challenges for new apps, but guidance to help developers turn the apps into sustainable businesses. The organization also signs up local hospitals and other institutional users to guarantee a market to app developers. Southern describes Innov8 for Health as a community-wide initiative to support local developers and attract new ones, while maintaining deep roots among multiple stakeholders across the health care, university, startup, investors, and employer stake holders. At the inaugural class, which just took place, eight companies were chosen to receive intensive mentoring, introductions and connections to potential customers and investors, and $20,000 to start their company in 12 weeks. Health data is a core element.

How far can a datapalooza take the health care field?

Health apps are a fast-growing segment of mobile development, and the government can certainly take some of the credit, along with VC and developer recognition that there's a lot of potential money to be made fixing health care. As Todd Park said, "The health innovation ecosystem is beautifully chaotic, self-propelled, and basically out of control." That means the toothpaste can't be put back in the tube, which is a good thing.

The HDI forum is glitzy and exciting--everybody in health care reform shows up, and the stage show is slickly coordinated--but we must remember the limits of apps in bringing about systemic change. It's great that you can use myDrugCo$ts.com to find a discount drug store near you. Even better, if your employer hooks you up to data sets provided by your insurer, myDrugCo$ts.com can warn you about restrictions that affect costs. But none of this will change the crazy pricing in the insurance plans themselves, or the overuse of drugs in medicine, or the inefficient development and testing methods that lead to high medication prices in the first place.

Caucus of Society for Participatory Medicine and friends
Caucus of Society for Participatory Medicine and friends.

Transparency by one department on one level can lead to expectations of transparency in other places too. As pricing in health care becomes more visible, it will become less defensible. But this requires a public movement. We could do great things if we could unlock the data collected by each hospital and insurance agency, but they see that data as their competitive arsenal and we are left with a tragedy of the anti-commons. It would be nice to say, "You use plenty of public data to aid your decision-making, now reciprocate with some of your own." This can be a campaign for reformers such as the Society for Participatory Medicine.

At the HDI forum, United Healthcare reported that they had enough data to profile patients at risk for diabetes and brought them in for a diabetes prevention program. This is only a sample of what can be done with data that is not yet public.

Aetna presenter shows CarePass on the main conference stage al at health care conference
Aetna presenter shows CarePass on the main conference stage.

Aetna is leading the way with a service called CarePass, currently holding a developer challenge. CarePass offers Aetna's data through an API, and they partner with other major data centers (somewhat as Microsoft does with HealthVault) to hook up data. Practice Fusion is also offering some data to researchers.

Even those bright-faced entrepreneurs launching businesses around data from HHS and elsewhere--certainly their success is one of the goals of the open data movement, but I worry that they will recreate the silos of the health care field in the area of patient data. What are they collecting on us as we obsessively enter our personal statistics into those devices? Who will be able to use the aggregate data building up on their servers?

So there are hints of a qualitative change that can come from quantitative growth in the release and reuse of health care data. The next step involves the use of personal data, which raises its own litany of issues in quality and privacy. That will be the subject of the last posting in this series.

June 11 2012

Health reform leaders focus on patient access to records as key barrier

A convocation of trend-setters and organizational leaders in U.S. health care was called together in Washington last Monday, June 4. The attendees advised two government organizations driving health reform--the Office of the National Coordinator at the Dept. of Health and Human Services, and the Dept. of Veteran Affairs--how to push forward one of their top goals, patient engagement.

The results of the meeting, to me, demonstrated mostly the primitive state of communications and coordinated care in the U.S. health system. In an earlier posting I discussed the sorry state of health data exchange, and Monday's patient access summit centered on the same factors of siloing and data hoarding as barriers to patient engagement.

Farzad Mostashari, the National Coordinator for Health Information Technology, tried to set the scope of the meeting as an incubator to suggest practical ways patients could use the data they get from health providers. (As I'll explain later, we also touched on data patients generate themselves.) His reasoning, which I endorse, is that patients currently can't do much with data except keep it somewhere and pass it to other health providers, so in order to engage them we need to provide tools for them to improve their health with this data.

But the pulse of the 75 or so attendees gave quite a different message: that we're nowhere near ready to discuss uses of data, and that our efforts at patient engagement should start with getting the data to the patients in the first place.

Several attendees have already blogged about various aspects of the meeting:

  • Brian Ahier summarizes the purpose and outcomes.

  • Dave Chase urges the government to create an environment that encourages the release of data to the patient.

  • Keith Boone focused on some interesting statements and ideas aired at the meeting.

In this posting, I'll discuss:

Why patient access is so important, and why it doesn't happen

The notions of patients pouring over doctors' notes, correlating their own test results, and making demands on their care providers may carry a faint whiff of utopianism, but thousands of patients do these things every day--and do them even when deprived of the electronic aids that could make these activities natural. The people in the room for the patient access summit were by no means utopians. They are intense movers in the health care field with deadlines to meet and budgets to allocate. So when they call for patient access to data, it's because they all see it as critical to solving the quality and cost problems their own organizations face.

Patient engagement is critical because most health care takes place outside the doctor's office or operating room. Patients need to take control of their own lifestyles for the problems that put a lot of strain on our health care system, such as obesity. They need to follow through on post-release instructions and monitor themselves for symptoms.

And in the silo'd state of today's health system, the patients need to make sure their data gets to health providers. We heard over and over at the patient access summit how patients have entered treatment centers without the information needed to treat them, how doctors would refuse point-blank (in violation of the law) to give patients their folders, and how patients received inadequate care because of the lack of information.

Patient participation in health care is not only good for the individuals who do it, but are crucial for prying open the system as a whole. The providers, vendors, and insurers are moving too slowly. Their standards and electronic health records lack fields for all the data people are generating through their Fitbits and Zeos, and they don't have pathways for continuously uploading patient-generated data. This lapse can be turned into a plus: device manufacturers and programmers out in the field will develop new, more flexible, more robust standards that will become the next generation of EHRs and personal health records. A strong push from empowered patients can really change the way doctors work, and the associated costs.

Major topics of debate

Opinions differ about the roles of electronic records, interchange systems, culture, and business models in the recalcitrance of doctors to release patient data, which I'll discuss in the last section of the article. Getting the answer to these questions right should determine the strategy government and consumers use to breach the silos. But the consensus at the patient access summity was that we need to pursue these strategies fast, and that the fate of the rest of health care reform will rest on our success.

The first half of the Washington meeting meandered through various classic areas under constant debate in the health care field. This seemed necessary so that the participants in the summit could feel each other out, untangle some of their differences and ultimately come to a position of trust so they could agree on the topics in the previous section. I noted the following topics that threaded through the debate without resolution.

Technology versus culture

Debates come up all the time when organizational change is on the agenda about the importance of the technologies people use versus their workflows, attitudes, and willingness to change. I find the discussions silly because people usually find themselves pushed to an either-or position and that just doesn't make sense. Of course technology can facilitate change, and of course the technology will be a big waste of time and money if the human participants fail to understand the behavior changes they need to make along the way.

But the Washington attendees raised these issues as part of the strategy-setting I mentioned earlier. Certainly, the government would prefer to avoid creating or mandating the use of certain technologies. The question is whether the ONC and VA can set goals and leave it up to the market to find the way.

Sometimes the health care field is so distorted and dysfunctional that the government feels it has to step in, such as when HHS created CONNECT and then Direct. Without these, the health care providers and health information exchanges (HIEs) would claim that exchanging patient data was an expensive or intractable problem. One might also interpret the release of VistA and BlueButton to the general public as the VA's statements about how health care should be conducted.

So Mostashari's original call for actions that patients could take fits into the technology end of the debate. By suggesting technological paths forward, we can effect cultural change. For instance, if a patient uses an app or web site to view all the potential reactions between the drugs she takes (and I heard one estimate this week that people in their 80s take between five and eight medications), she can warn her own doctor about an adverse reaction.

Ultimately, the working groups that today's meeting settled on included a lot of technological innovation.

The need for standards

Standard setting is another perennial area for disagreement, because premature standard-setting, like premature optimization, can have an effect opposite to what you want. If we took all the efforts that companies put into standards that bombed in the marketplace and devoted the resources over the decades to competition between innovations, we might have an explosion of new technologies. So even if you accept the value of technology to effect culture change, you can ask where and when can governments and standards committees can intervene positively.

And this caution applies to health care too. The old guard of EHRs and HIE suffer from a lack of (useful) standards. But I mentioned earlier, an exciting explosion of patient-centered apps and devices is developing in the absence of standards. The Washington meeting ended up endorsing many standard-setting efforts, although these applied mostly to mature fields such as EHRs.

Transfer standards versus data format standards

Mixed up in the debate over the timing of standards was a distinction between standards used for sending data around and standards used to represent the data. The former are called protocols in the communications field. HTTP is a transfer standard, for instance, whereas as HTML is a data format standard. Both are needed to make the World Wide Web operate. And both ended up part of the action items from the patient access summit.

Privacy versus data availability

As I reported from the first health privacy conference, health care advocates argue over the importance of privacy. At the patient access summit, everybody who spoke on this topic prioritized the exchange of data. Privacy concerns are the magic amulet that providers wave at patients to ward off their requests for data. But in fact, the much-derided Health Insurance Portability and Accountability Act (HIPAA) requires providers to give patients data: that's what the terms Portability and Accountability in the name refer to. The providers are required to take reasonable steps to preserve privacy--and the Direct project aims to simplify these--but the patient can waive even these modest safeguards if he or she is anxious to get the data quickly.

Given our skepticism toward claims of security concerns, a bit of security theater we encountered as we entered the conference center is illustrative. We were warned ahead of time that the facility was secure and told to bring a government-issued photo ID. Indeed, the guard checked my ID and looked at my face when I entered, but nobody checked my name against a list to see whether I was actually supposed to be there.

A later article in this series will explore the relationships between privacy, security, patient access, accuracy, and accountability that create a philosophy of control.

Motivations for doctors versus patients

Another topic at the patient access summit that reflected a dilemma in the health care field is how much effort to aim at the doctors versus the patients, when trying to change the behavior of both. Many patients try to engage as adults in their own care and are stymied by resistant doctors. And as I pointed out in an earlier posting, the patients who need the most lifestyle changes ignore their own perilous conditions. So these considerations would suggest focusing on motivations for doctors to change.

But a market approach would suggest that, when enough patients want to have a say in their care, and have the means to choose their doctors, change will reach the examination rooms. The conclusions of the patient access summit did not reflect any particular positions along this spectrum. Participants pointed out, however, that institutions such as Kaiser Permanente who wanted patients to use their portals invested a lot into advertising them.

Pushing versus pulling data

Telephone calls, email, and online chats are push technology, in that the person sending them decides when (approximately) they are delivered. The web is a pull technology, because the recipient visits the site at his or her choosing. In health exchange, one doctor may push a patient's records to the next provider, or the next provider can pull them when the patient is due to arrive. Sometimes articulated unhelpfully as a battle for push versus pull, our discussion revealed that each had its uses.

The issue is especially salient when a patient has records stored by multiple institutions. Currently, a patient can pull records from each and (if they use a common format such as BlueButton) combine them. In fact, a mobile app named iBlueButton allows a patient to show data from providers to a doctor during a visit. But it would be much better for each institution to push information to the patient as it's added to the institution's record. This would bring us closer to the ideal situation where records are stored by a site on behalf of the patient, not the doctor.

Three action items from today's meeting

Now we get to the meat of the summit. Leaders asked participants to define areas for research and to make commitments to incorporate the results of the research teams into their products and activities. Three action items were chosen, and two were excluded from consideration at this round.

Automated downloads

A number of organizations, such as Aetna Health Plans have adopted the BlueButton format created at the VA. In the line-up of data formats available for storing health information, BlueButton is shockingly casual. But it's list of plain-text fields is easy to read and unfrightening for patients. It is also undeniably popular, as the number of VA patients downloading their data approaches one million. So the immediate impetus for the first goal of the patient access summit, dubbed "automating BlueButton," is to keep patients' records up to date and integrated by pushing data to them from institutional EHRs.

But BlueButton can be massaged into other formats easier for programs to manipulate, the so the "automating BlueButton" task really refers to the entire movement to empower patients who want control over their records. One way to state the principle is that every action in a hospital's or doctor's EHR will be accompanied by an update to the patient's copy of the data. Hopefully this movement will soon lead to simple but program-friendly XML formats, robust transfer standards such as Direct, and universal integration of hospital and clinic EHRs with patient health records.

Identification and access technologies

Congress has ruled out a single nation-wide ID for patients, thanks to worries from privacy advocates that the system could facilitate identity theft and commercial data mining. Some have proposed a Voluntary Universal Healthcare Identifier (VUHID), but that's encumbered with the same problems. Identification systems used nowadays for HIE are cumbersome and error-prone, and revolve around cooperating health care institutions rather than individual patients with few resources. Individual hospitals can verify patients' email addresses and passwords when they come in for treatment, but in-person authentication doesn't scale to data exchange.

A more rational solution revolves around certificates and digital signatures, which security-conscious institutions in government and industry have used for years. The has gotten a bit of a bad rep because it has been poorly implemented on the Web (where browsers trust too many certificate authorities, and system administrators fail to keep accurate signatures) but the health care system is quite capable of implementing it properly. The Direct Trust project is creating a set of practices and hopefully will stimulate the industry to create such a system. In fact, I think Direct Trust is already addressing the issues listed under this task. OAuth was also mentioned repeatedly at the summit. the National Strategy for Trusted Identities in Cyberspace was also mentioned.

The questions of identifying oneself and of authorizing access to data are linked, so they were combined in a single working group even though they are somewhat distinct technically.

Standards for content

The final task approved at the patient access summit was to work further on data standards. It was late in the day and the task was defined only in a very broad manner. But I think it's an important leg of the patient access stool because current standards for patient data, such as HL7's CDA, were meant for communicating the results of clinical interventions. They'll be hard to use when patients generate and store their own data, both because they lack the appropriate fields and because they aren't designed for continuous uploads of data. Segmented access (allowing providers to see certain records while withholding records that the patient considers sensitive) was also mentioned.

Patient-generated data

I mentioned at the summit that patients are starting to generate data that could be invaluable in their treatment, and that the possession of this data gives them leverage. Doctors who are serious about treating common chronic issues such as hypertension, or any condition that can be improved through careful monitoring, will want the patient data. And patients can use their leverage to open up doctors' EHRs. As patients got more involved in their care, the very term "provider" (meaning a doctor or other professional who provides diagnosis and treatment) will become obsolete. Patients will be co-providers along with their professional team.

Patient-generated data got some attention during the day, but the attendees concluded that not enough time had been spent on it to turn it into an action item.

Privacy

The final issue on the agenda for the day was privacy. I estimate that we spent a full half-hour at one point, in addition to which it was raised at other times. Because I am covering privacy in the third article of this series, I'll simply say here that the attendees were most concerned about removing excuses for data exchange, and did not treat risks to privacy as a problem to be fixed.

What did the patient access summit accomplish?

I'm proud that the ONC and VA created a major discussion forum for patient access. I think the issues that came up were familiar to all participants in the meeting, and that ONC together with industry partners is already moving forward on them. The summit provided affirmation that the health care field as a whole takes the issues seriously, and the commitments that will arise from the meeting will lend more weight to government efforts.

And a lot of the time, knowledgeable patients need to know that progressive health care leaders and the government have "got their back" as they demand their rights to know what's going on in their bodies. The Office of Civil Rights has publicly championed the patients' right to their data (in fact, the biggest fine they've levied for a HIPAA violation concerns a refusal to release data to a patient), and the initiatives we all supported last Monday will give them more tools to use it.

Regulations can make a difference. A representative from Practice Fusion told me they offered a patient download option on their EHR service years ago, but that most doctors refused to allow it. After the ONC's meaningful use regulations required patient access, adoption by doctors went up 600%.

While laying the groundwork for patient access, we are ready to look forward to wonderful things patients and providers can do with data. That will be the subject of my next article in the series, which will cover the health data initiative forum I attended the next day.

May 06 2012

The state of health IT according to the American Hospital Association

Last week, the American Hospital Association released a major document. Framed as comments on a major federal initiative, the proposed Stage 2 Meaningful Use criteria by the Centers for Medicare & Medicaid Services (CMS), the letter also conveys a rather sorrowful message about the state of health IT in the United States. One request--to put brakes on the requirement for hospitals to let patients see their own information electronically--has received particularly strong coverage and vigorous responses from e-Patient Dave deBronkart, Regina Holliday, Dr. Adrian Gropper, Fred Trotter, the Center for Democracy and Technology, and others.

I think the AHA has overreached in its bid to slow down patient access to data, which I'll examine later in this article. But to me, the most poignant aspect of the AHA letter is its careful accumulation of data to show the huge gap between what health care calls for and what hospitals, vendors, standards bodies, and even the government are capable of providing.

Two AHA staff were generous enough to talk to me on very short notice and offer some clarifications that I'll include with the article.

A survey of the U.S. health care system

According to the AHA (translated into my own rather harsh words), the state of health IT in American hospitals is as follows:

  • Few hospitals and doctors can fulfill basic requirements of health care quality and cost control. For instance, 62% could not record basic patient health indicators such as weight and blood pressure (page 51 of their report) in electronic health records (EHRs).

  • Many EHR vendors can't support the meaningful use criteria in real-life settings, even when their systems were officially certified to do so. I'll cite some statements from the AHA report later in the article. Meaningful use is a big package of reforms, of course, promulgated over just a few years, but it's also difficult because vendors and hospitals had also been heading for a long time in the opposite direction: toward closed, limited functionality.

  • Doctors still record huge globs of patient data in unstructured text format, where they are unavailable for quality reporting, tracking clinical effectiveness, etc. Data is often unstructured because humans are complex and their symptoms don't fit into easy categories. Yet doctors have learned to make diagnoses for purposes of payment and other requirements; we need to learn what other forms of information are worth formalizing for the sake of better public health.

  • Quality reporting is a mess. The measures currently being reported are unreliable, and standards have not been put in place to allow valid comparisons of measures from different hospitals.

  • Government hasn't stepped up to the plate to perform its role in supporting electronic reporting. For instance, the Centers for Medicare & Medicaid Services (CMS) wants the hospitals to report lots of quality measures, but its own electronic reporting system is still in the testing stages, so hospitals must enter data through a cumbersome and error-prone manual "attestation." States aren't ready to accept electronic submissions either. The Direct project is moving along, but its contribution to health data exchange is still very new.

There's no easy place to assign blame for a system that is killing hundreds of thousands of people a year while sticking the US public with rising costs. The AHA letter constantly assures us that they approve the meaningful use objectives , but say their implementation in a foreseeable time frame is unfeasible. "We can envision a time when all automated quality reporting will occur effortlessly in a reliable and valid fashion. However, we are not there yet." (pp. 42-43)

So the AHA message petition to the CMS can be summarized overall as, "Slow everything down, but keep the payments coming."

AHA staff referred to the extensively researched article, A Progress Report On Electronic Health Records In U.S. Hospitals. It corroborates observations that adoption of EHRs has vastly increased between 2010 and 2011. However, the capabilities of the EHRs and hospitals using them have not kept up with meaningful use requirements, particularly among small rural hospitals with few opportunities to hire sophisticated computer technicians, etc. Some small hospitals have trouble even getting an EHR vendor to talk to them.

Why all this matters

Before looking at some details, let me lay out some of the reasons that meaningful use criteria are so important to patients and the general public:

  • After treatment, data must be transferred quickly to patients and the next organizations treating them (such as rehab centers and visiting nurses) so that the patients receive proper care.

  • Quality measures are critical so that hospitals can be exposed to sunshine, the best disinfectant, and be shamed into lowering costs and reducing errors.

  • Data must be collected by public agencies so that data crunchers can find improvements in outreach and treatment. Hospitals love to keep their data private, but that gives them relatively tiny samples on which to base decisions, and they often lack the skills to analyze the data.

No one can predict what will break logjams and propel health care forward, but the patient engagement seems crucial because most health care problems in developed countries involve lifestyle issues such as smoking and body weight. Next, to provide the kind of instant, pervasive patient engagement that can produce change, we need electronic records that are open to innovative apps, that can accept data from the patient-centered medical home, and that link together all care-givers.

The state of electronic health records

The EHR industry does not come out well in the AHA list of woes. The letter cites "unworkable, but certified, vendor products" (p.3) and say, "Current experience is marked by limited vendor and workforce capacity." (p. 7) The latter complaint points to one of the big hurdles facing health care reform: we don't have enough staff who understand computer systems and who can adapt their behavior to use them effectively.

Functionality falls far short of real hospital needs:

...one hospital system spent more than $1 million on a quality reporting tool from its vendor that was, for the most part, an unwieldy data entry screen. Even medication orders placed using CPOE [computerized physician order entry] needed to be manually re-entered for the CQM [Center For Quality Management] calculation. Even then, the data were not reliable, despite seven months of working with the vendor to attempt to get it right. Thus, after tremendous investment of financial and human resources, the data are not useful. (p. 45)

The AHA claims that vendors were lax in testing their systems, and that the government abetted the omission: "the proposals within the certification regulation require vendors to incorporate all of the data elements needed to calculate only one CQM. There is no proposal to require that certified EHRs be capable of generating all of the relevant CQMs proposed/finalized by CMS." (p. 41) With perhaps a subtle sarcasm, the AHA proposes, "CMS should not require providers to report more e-measures than vendors are required to generate." (p. 36)

Vendors kind of take it on the chin for fundamental failures in electronic capabilities. "AHA survey data indicate that only 10 percent of hospitals had a patient portal of any kind in Fall 2011. Our members report that none had anywhere near the functionality required by this objective. In canvassing vendors, they report no technology companies can currently support this volume of data or the listed functions." (p. 26)

We can add an observation from the College of Healthcare Information Management Executives (CHIME):

...in Stage 1, some vendors were able to dictate which clinical quality measures providers chose to report--not based on the priorities of the provider, but based on the capabilities of the system. Subsequently, market forces corrected this and vendors have gone on to develop more capabilities. But this anecdote provides an important lesson when segmenting certification criteria--indeed for most technologies in general--flexibility for users necessitates consistent and robust standards for developers. In short, the 2014 Edition must require more of the vendor community if providers are to have space to pursue meaningful use of Meaningful Use. (p. 2)

Better standards--which take time to develop--could improve the situation, which is why the Office of the National Coordinator (ONC) has set up a Health IT Standards Committee. For instance, the AHA says, "we have discovered that vendors needed to program many decisions into EHRs that were not included in the e-specifications. Not only has this resulted in rampant inconsistencies between different vendors, it produced inconsistent measure results when the e-measures are compared to their counterparts in the Inpatient Quality Reporting (IQR) Program." (p. 35)

The AHA goes so far as to say, "The market cannot sustain this level of chaos." (p. 7) They conclude that the government is pushing too hard. One of their claims, though, comes across as eccentric: "Providers and vendors agree that the meaningful use program has stifled innovation in the development of new uses of EHRs." (p. 9)

To me, all the evidence points in the opposite direction. The vendors were happy for decades to push systems that performed minimal record-keeping and modest support such as formularies at huge costs, and the hospitals that adopted EHRs failed to ask for more. It wasn't a case of market failure because, as I have pointed out (and others have too), health care is not a market. But nothing would have changed had not the government stepped in.

Patient empowerment

Now for the point that has received the most press, AHA's request to weaken the rules giving patients access to their data. Once again, the AHA claims to favor patient access--and actually, they have helped hospitals over the years to give patients summaries of care, mostly on paper--but are passing on the evidence they have accumulated from their members that the systems will not be in place to support electronic distribution for some time. I won't repeat all the criticisms of the experts mentioned at the beginning of this article, but provide some perspective about patient engagement.

Let's start with the AHA's request to let the hospital can choose the format for patient data (pp. 25-26). So long as hospitals can do that, we will be left with formats that are not interoperable. Many hospitals will choose formats that are human-readable but not machine-readable, so that correlations and useful data cannot be extracted programmatically. Perhaps the technology lags in this area--but if the records are not in structured format already, hospitals themselves lose critical opportunities to check for errors, mine data for trends, and perform other useful tasks with their records.

The AHA raises alarms at the difficulties of providing data. They claim that for each patient who is treated, the hospital will have to invest resources "determining which records are relevant and appropriate." (p. 26) "It is also unclear whether a hospital would be expected to spend resources to post information and verify that all of the data listed are available within 36 hours." (p. 27)

From my perspective, the patient download provisions would simply require hospitals to clean up their ways of recording data so that it is in a useable and structured format for all, including their own staff. Just evaluate what the AHA is admitting to in the following passage: "Transferring these clinical observations into a structured, coded problem list in the EHR requires significant changes to work flows and training to ensure accuracy. It also increases time demands for documentation by physicians who already are stretched thin." (p. 27)

People used to getting instant information from commercial web sites find it very hard to justify even the 36-hour delay offered by the Stage 2 meaningful use guidelines. Amazon.com can provide me with information on all my current and recent orders. Google offers each registered user a dashboard that shows me everything they track about me, including all my web searches going back to mid-2006. They probably do this to assure people that they are not the egregious privacy violators they are regularly accused of being. Nevertheless, it shows that sites collecting data can make it available to users without friction, and with adequate security to manage privacy risks.

The AHA staff made a good point in talking to me. The CMS "transmit" requirement would let a patient ask the hospital to send his records to any institution or individual of his choice. First of all, this would assume that the recipient has encrypted email or access to an encrypted web site. And it could be hard for a hospital to make sure both the requester and the intended recipient are who they claim to be. "The transmit function also heightens security risks, as the hospital could be asked to send data to an individual with whom it has no existing relationship and no mechanism for authentication of their identity." (p. 27) Countering this claim, Gropper and the Society for Participatory Medicine offer the open OAuth standard to give patients easy and secure access. But while OAuth is a fairly stable standard, the AHA's concerns are justified because it hasn't been applied yet to the health care field.

Unfortunately, allowing a patient to send his or her data to a third party is central to Accountable Care Organizations (ACOs), which hold the promise of improving patient care by sharing data among cooperating health care providers. If the "transmit" provision is delayed, I don't see how ACOs can take off.

The AHA drastically reduces the information hospitals would have to give patients, at least for the next stage of the requirements. Among the material they would remove are diagnoses, the reason for hospitalization, providers of care during hospitalization, vital signs at discharge, laboratory test results, the care transition summary and plan for next provider of care, and discharge instructions for patient. (p. 27) All this vastly reduces the value of data for increasing quality care. For instance, removing lab test results will lead to expensive and redundant retesting. (However, the AHA staff told me they support the ability of patients to get results directly from the labs.)

I'll conclude this section with the interesting observation that the CHIME comments on meaningful use I mentioned earlier say nothing about the patient engagement rules. In other words, the hospital CIOs in CHIME don't back up the hospitals' own claims.

Some reasonable AHA objections

Now I'm happy to turn to AHA proposals that leave fewer impediments to the achievement of better health care. Their 49-page letter (plus appendices) details many aspects of Stage 2 that seem unnecessarily burdensome or of questionable value.

It seems reasonable to me to ask the ONC, "Remove measures that make the performance of hospitals and EPs contingent on the actions of others." (p. 2) For instance, to engage in successful exchanges of patient data, hospitals depend on their partners (labs, nursing homes, other hospitals) to have Stage 2 capabilities, and given the slow rate of adoption, such partners could be really hard to find.

The same goes for patient downloads. Not only do hospitals have to permit patients to get access to data over the Internet, but they have to get 10% of the patients to actually do it. I don't think the tools are in place yet for patients to make good use of the data. When data is available, apps for processing the data will flood the market and patients will gradually understand the data's value, but right now there are few reasons to download it: perhaps to give it to a relative who is caring for the patient or to a health provider who doesn't have the technical means to request the data directly. Such uses may allow hospitals to reach the 10% required by the Stage 2 rule, but why make them responsible?

The AHA documents a growing digital divide among hospitals and other health care providers. "Rural, smaller and nonteaching hospitals have fewer financial and technical resources at their disposal. They also are starting from a lower base of adoption." (p. 59) The open source community needs to step up here. There are plenty of free software solutions to choose from, but small providers can't use them unless they become as easy to set up and configure as MySQL or even LibreOffice.

The AHA is talking from deep experience when it questions whether patients will actually be able to make use of medical images. "Images are generally very large files, and would require that the individual downloading or receiving the file have specialized, expensive software to access the images. The effort required to make the images available would be tremendous." (p. 26) We must remember that parts of our country don't even have high-speed Internet access.

The AHA's detailed comments about CMS penalties for the slow adoption of EHRs (pp. 9-18) also seem to reflect the hard realities out in the field.

But their attitude toward HIPAA is unclear. They point out that Congress required meaningful use to "take into account the requirements of HIPAA privacy and security law." (p. 25) Nevertheless, they ask the ONC to remove its HIPAA-related clauses from meaningful use because HIPAA is already administered by the Office of Civil Rights (OCR). It's reasonable to remove redundancy by keeping regulations under a single agency, but the AHA admits that the OCR proposal itself is "significantly flawed." Their staff explained to me that their goal is to wait for the next version of the OCR's own proposal, which should be released soon, before creating a new requirement that could well be redundant or conflicting.

Unless we level the playing field for small providers, an enormous wave of buy-outs and consolidation will occur. Market forces and the push to form ACOs are already causing such consolidation. Maybe it's even a good thing--who feels nostalgic for the corner grocery? But consolidation will make it even more important to empower patients with their data, in order to counterbalance the power of the health care institutions.

A closing note about hospital inertia

The AHA includes in its letter some valuable data about difficulties and costs of implementing new systems (pp. 47-48). They say, "More than one hospital executive has reported that managing the meaningful use implementation has been more challenging than building a new hospital, even while acknowledging the need to move ahead." (p. 49)

What I find particularly troublesome about their report is that the AHA offers no hint that the hospitals spent all this money to put in place new workflows that could improve care. All the money went to EHRs and the minimal training and installation they require. What will it take for hospitals to make the culture changes that reap the potential benefits of EHRs and data transfers? The public needs to start asking tough questions, and the Stage 2 requirements should be robust enough to give these questions a basis.

March 26 2012

Five tough lessons I had to learn about health care

Working in the health care space has forced me to give up many hopes and expectations that I had a few years ago. Forgive me for being cynical (it's an easy feeling to have following the country's largest health IT conference, as I reported a month ago), and indeed some positive trends do step in to shore up hope. I'll go over the redeeming factors after listing the five tough lessons.

1. The health care field will not adopt a Silicon Valley mentality

Wild, willful, ego-driven experimentation--a zeal for throwing money after intriguing ideas with minimal business plans--has seemed work for the computer field, and much of the world is trying to adopt a "California optimism." A lot of venture capitalists and technology fans deem this attitude the way to redeem health care from its morass of expensive solutions that don't lead to cures. But it won't happen, at least not the way they paint it.

Health care is one of the most regulated fields in public life, and we want it that way. From the moment we walk into a health facility, we expect the staff to be following rigorous policies to avoid infections. (They don't, but we expect them to.) And not just anybody can set up a shield outside the door and call themselves a doctor. In the nineteenth century it was easier, but we don't consider that a golden age of medicine.

Instead, doctors go through some of the longest and most demanding training that exists in the world today. And even after they're licensed, they have to regularly sign up for continuing education to keep practicing. Other fields in medicine are similar. The whole industry is constrained by endless requirements that make sure the insiders remain in their seats and no "disruptive technologies" raise surprises. Just ask a legal expert about the complex mesh of Federal and state regulations that a health care provider has to navigate to protect patient privacy--and you do want your medical records to be private, don't you?--before you rave about the Silicon Valley mentality. Also read the O'Reilly book by Fred Trotter and David Uhlman about the health care system as it really is.

Nor can patients change treatments with the ease of closing down a Facebook account. Once a patient has established a trust relationship with a doctor and obtained a treatment plan, he or she won't say, "I think I'll go down the road to another center that charges $100 less for this procedure." And indeed, health reform doesn't prosper from breaking down treatments into individual chunks. Progress lies in the opposite direction: the redemptive potential of long-term relationships.

2. Regulations can't force change

I am very impressed with the HITECH act (a product of the American Recovery and Reinvestment Act, more than the Affordable Care Act) that set modern health reform in motion, as well as the efforts of the Department of Health and Human Services to push institutions forward. But change in health care, like education, boils down to the interaction in a room between a professional and a client. Just as lesson plans and tests can't ensure that a teacher inspires a child to learn, regulations can't keep a doctor from ordering an unnecessary test to placate an anxious patient.

We can offer clinical decision support to suggest what has worked for other patients, but we can't keep a patient from asking for a expensive procedure that has a 10% chance of making him better (and a 20% chance of making him worse), nor can we make the moral decision about what treatment to pursue, for the patient or the doctor. Each patient is different, anyway. No one wants to be a statistic.

3. The insurance companies are not the locus of cost and treatment problems

Health insurers are a favorite target of hatred by Americans, exemplified by Michael Moore's 2007 movie Sicko and more surprisingly in the 1997 romantic comedy As Good as it Gets, where I saw an audience applaud as Helen Hunt delivered a rant against health maintenance organizations. A lot of activists, looking at other countries, declare that our problems would be solved (well, would improve a lot) if we got private insurers out of the picture.

Sure, there's a lot of waste in the current insurance system, which deliberately stretches out the task of payment and makes it take up the days of full-time staff in each doctor's office. But that's not the cause of the main problems in either costs or treatment failures. The problems lie with the beloved treatment staff. We can respect their hard work and the lives they save, but we don't have to respect them for releasing patients from hospitals without adequate follow-up, or for ordering unnecessary radiation that creates harm for patients, or for the preventable errors that still (after years of publicity) kill 90,000 to 100,000 patients a year.

4. Doctors don't want to be care managers

The premise of health reform is to integrate patients into a larger plan for managing a population. A doctor is supposed to manage a case load and keep his or her pipeline full while not spending too much. The thrust of various remuneration schemes, old and new, that go beyond fee for service (capitation, global payment systems) is to reward a doctor for handling patients of a particular type (for instance, elderly people with hypertension) at a particular cost. But doctors aren't trained for this. They want to fix the immediate, presenting complaint and send the patient home until they're needed again. Some think longitudinally, and diligently try to treat the whole person rather than a symptom. But managing their treatment options as a finite resource is just not in their skill set.

The United Kingdom--host of one of the world's great national care systems--is about to launch a bold new program where doctors have to do case management. The doctors are rebelling. If this is the future of medicine, we'll have to find new medical personnel to do it.

5. Patients don't want to be care managers

Now that the medical field has responded superbly to acute health problems, we are left with long-term problems that require lifestyle and environmental changes. The patient is even more important than the doctor in these modern ills. But the patients who cost the most and need to make the most far-ranging changes are demonstrating an immunity to good advice. They didn't get emphysema or Type 2 diabetes by acting healthily in the first place, and they aren't about to climb out of their condition voluntarily either.

You know what the problem with chronic disease is? Its worst effects are not likely to show up early in life when lifestyle change could make the most difference. (Serious pain can come quickly from some chronic illnesses, such as asthma and Crohn's disease, but these are also hard to fix through lifestyle changes, if by "lifestyle change" you mean breathing clean air.) The changes a patient would have to make to prevent smoking-related lung disease or obesity-related problems would require a piercing re-evaluation of his course of life, which few can do. And incidentally, they are neither motivated nor trained to store their own personal health records.

Hope for the future

Despite the disappointments I've undergone in learning about health care, I expect the system to change for the better. It has to, because the public just won't tolerate more precipitous price hikes and sub-standard care.

There's a paucity of citations in my five lessons because they tend not to be laid out bluntly in research or opinion pieces; for the most part, they emerged gradually over many hallway conversations I had. Each of the five lessons contain a "not," indicating that they attack common myths. Myths (in the traditional sense) in fact are very useful constructs, because they organize the understanding of the world that societies have trouble articulating in other ways. We can realize that myths are historically inaccurate while finding positive steps forward in them.

The Silicon Valley mentality will have some effect through new devices and mobile phone apps that promote healthy activity. They can help with everything from basic compliance--remembering to take prescribed meds--to promoting fitness crazes and keeping disabled people in their homes. Lectures given once in a year in the doctor's office don't lead to deep personal change, but having a helper nearby (even a digital one) can impel a person to act better, hour by hour and day by day. This has been proven by psychologists over and over: motivation is best delivered in small, regular doses (a theme found in my posting from HIMSS).

Because the most needy patients are often the most recalcitrant ones, personal responsibility has to intersect with professional guidance. A doctor has to work the patient, and other staff can shore up good habits as well. This requires the doctors' electronic record systems to accept patient data, such as weight and mood. Projects such as Indivo X support these enhancements, which traditional electronic record systems are ill-prepared for.

Although doctors eschew case management, there are plenty of other professionals who can help them with it, and forming Accountable Care Organizations gives the treatment staff access to such help. Tons of potential savings lie in the data that clinicians could collect and aggregate. Still more data is being loaded by the federal government regularly at Health.Data.Gov. ACOs and other large institutions can hire people who love to crunch big data (if such staff can be found, because they're in extremely high demand now in almost every industry) to create systems that slide seamlessly into clinical decision support and provide guidelines for better treatment, as well as handle the clinic's logistics better. So what we need to do is train a lot more experts in big data to understand the health care field and crunch its numbers.

Change will be disruptive, and will not be welcomed with open arms. Those who want a better system need to look at the areas where change is most likely to make a difference.

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