Looking Ahead to 2014: The Dilemma of Transparency in Health Care

By now, I'd say it's fair to presume that the dust from last night's New Year's Eve bonanza has finally settled as many around the world gathered in city and town centers to celebrate the year that was while simultaneously turning over a new leaf, looking ahead to a new beginning in 2014. As the sun has set on Day 1 of the new year, marking the official start date of the Affordable Care Act (ACA), it's unlikely that anyone would be able to forecast with any certainty what we all have in store in the coming year. One thing I can state fairly is that the dust has far from settled in the individual health insurance marketplaces spread across the country - not even close in fact, as things have really just started to heat up! Over Christmas, the marketplaces played host to all sorts of activity as a few hundred thousand newly eligibles - those previously denied coverage due to pre-existing conditions in addition to those who previously held coverage now deemed insufficient - across the country were stirring (all through the house) to make their ways onto their respective insurance marketplaces to secure a health insurance plan for the new year (the best gift of all!).

The latest figures as of December 24th show nearly 2 million Americans having signed up for new coverage via the state and federally run health insurance marketplaces with the federal healthcare.gov website accounting for just over 1.1 million of that total - a drastic improvement from a few months back, but still a tad shy of the Health & Human Services' prediction of 3+ million by this date. Experiences in Massachusetts would suggest we have little to fret however, with still three months of open enrollment remaining (ending March 31, 2014).

This figure's title speaks for itself - health insurance enrollment data from Massachusetts, February - December 2007.

Despite these assurances, the media will most certainly be gearing up in all too characteristic fashion following the wake of yet another successful holiday season; with retail shops freshly picked clean, there will be only one logical story to turn our collective attention to - and that my friends is the tale of Obamacare, healthcare.gov and open enrollment. Over the coming month, fleets of straight shooting sensationalist reporters, who by definition never shy away from the heart of the issue, rather only becoming more bold as the issues become bigger, will inflict viewers with the usual onslaught of coverage on the new health care law, undoubtedly yielding stories of "promises" (broken, kept and empty), "trust", "accountability", "loved ones lost" and downright "fear" - a supreme repertoire fit for only the finest provocateur.

However, there is one word unmentioned thus far that may trump the lot when it comes to health care in 2014 and beyond. That is to speak of "transparency" in health care.

The word itself has shown increasing relevance in the legislation - jumping from being mentioned five times in Massachusetts' health care law of 2008 to a whopping twelve times in the corresponding legislation from this past year, just four years later. By no means a comparison of any statistical significance, it is however a hint, that we should take as signaling that maybe there's something to this word that the legislation has deemed worthy of repeatedly impressing upon, both in its legal and practical applications. Maybe it has something to do with the lack of transparency in health care to date??

For us to know exactly what the word entails for reform efforts, it's going to take a bit more than a simple show of hands from legislators. Rather, a more qualitative analysis must be employed - and for these purposes it will help if we remove our noses from the bully pulpit for a moment and take a step back to gain perspective on different ways that transparency could be applied in our ever increasing web of a health care system. For this exercise, it will be useful to recall the different players involved in our current state of health affairs; for a refresher, feel free to reference the list compiled in "Accountable for Change?".

As a means toward understanding what greater "transparency" may hold for different players in health care, we will be asking ourselves the following question:

What does transparency mean for _____________? Filling in the blank with one of the following:
"Patients", "Providers", "Payers", "Regulators", "Manufacturers", "Law", "Policymakers".





(A) First off, what does transparency mean for patients?

Transparency will ultimately connote a number of things for those engaged as consumers of health care. First of all, added transparency has great potential to drastically affect how physicians and patients interact. We've already seen marked changes in this relationship over the years; with the advent of the internet, patients have an unparalleled ability to engage with their doctors by accessing scrolls of information on their condition, bringing some to even offer their own initial diagnosis - a dynamic that would have been unheard of fifty years ago. This brings to light one important aspect of transparency, which is free reign on information. Yes, people have for a long time been able to access information through printed resources at their local library, but with the ubiquity of smartphones today we're seeing a whole new culture emerging around how patients are able to engage with the library of information readily available to us via the internet, and ultimately engage with their providers. (Worth noting, unlike our local library, the internet provides information, both relevant and completely irrelevant to one's actual condition.)

In signing transparency into the statutes of law, we're looking to progress this type of data sharing a whole world's further from its current form. I'm talking, giving patients free access to their medical records via online platforms such as those piloted at Beth Israel Deaconess Medical Center and other medical centers (one in Pennsylvania and the other in Washington) through the OpenNotes initiative. Some might say that's a given, hell, it may even be seen as our right as consumers to have free access to our own medical records! Isn't that what HIPAA is all about? In responding to this, I would beg the question, then why aren't we there yet?

Just the other month, in my own personal dispute with my health insurance provider, I had to cough up $25 just to receive a copy of my medical records for one procedure (being charged by the page), which then took almost a week to arrive via U.S. postal service. In the age of instant streaming and mp3 downloads, this just isn't right. With stores of records in physical form, it's no secret that health care has seriously lagged behind other sectors in joining the rest of us in the digital age. New legislation has targeted this facet of the industry as a means of urging this process forward, with some deadlines set for getting providers online with electronic health records (EHR) by 2015. But still, what will happen then? It's not a given that we will be able to freely access our medical records. Clearly, in the past, there has been some reluctance toward freely disclosing medical records to patients; and it likely stems from a long history of privacy & security, trust & litigation and access & accountability in health care.

With the opening up of medical records, the power dynamic may swing for the first time in favor of the patient - or at least, this is a fear of many providers. In many relationships, power is determined by who holds the most information or the key to accessing it. Insurance companies (e.g. payers) use this discrepancy to their advantage all the time - in fact, it's what their entire industry is predicated on. Insurance companies are betting that they know more than the average consumer does about health risks and cost of care - and to date, in almost all occurrences, they're right in placing that bet, having yielded huge profits in the process.

Similarly, physicians, holding court at the top of the professional pyramid, have long been held in the highest regard and rarely, if ever, were questioned on their medical knowledge and decision making (not too uncommonly stretching their authority far outside of medicine) - in some cultures, it remains customary to strictly "obey the doctor's orders". As I said, however, it hasn't been all that long since patients became active participants in their own health's dialogue. By having access to medical records, patients could play an even more active role, as they would be able to retain all relevant information from their appointments, increasing the likelihood that they stick to the doctor's plan while also catching clinicians where they may have erred. This type of accountability to a provider could spell trouble measured in six, maybe even seven, figures of malpractice claims. Doctors already spend tens to hundreds of thousands of dollars a year for malpractice insurance to protect themselves against the patients that they themselves are entrusted to protect. Despite the potential for improving patient compliance, would doctors see this number in fees go up with greater transparency!?

And what about being able to actually shop for care? Imagine a world where comprehensive performance records are kept on all hospital systems. Where prices of procedures are accessible pre-treatment and not disguised by insurance providers or hidden away, either intentionally or unintentionally because of the system's complexity. This type of information could allow for patients to make better informed choices about their health care needs - so it's not just freely available information, but more of it! (e.g. more tracking = more accountability). Some that might have even been previously unavailable to providers and payers as well. So in the event that a hospital, physician or accountable care organization makes the claim that they're providing you with the best care, which would necessitate higher costs, you as the consumer can go straight to the records and see how they truly compare against the competition. Those in favor of the "free market" should know what this type of competition can do for system improvement. And patients would arguably trust in their providers more, not less, given their openness in sharing their performance metrics and finances, which might even turn the tides to result in fewer litigation against providers = a win + win situation.

In order for us to get anywhere close to making this a reality however, we must first, as Donald Berwick has stressed, measure ourselves to learn how we as providers perform in providing care, and second, be more open in sharing these results widely; to the public, to other providers - essentially, make it freely available to whoever is interested to go looking for it.

In Massachusetts, we've seen a steady shift in our state governance toward adopting a paradigm of greater transparency following the passing of the hallmark health care legislation in 2006. The Commonwealth has, in the past several years, newly established through the legislation both the Center for Health Information Analysis (CHIA) and the Health Policy Commission (HPC), respectively tasked with tracking the performance of the state's health care system and creating steps to proceed with its progress through policy innovation. Additionally, these organizations are entirely committed to transparency - making all of the information that they create and gather freely available to the public via their websites and regularly scheduled public hearings. That's what I call accountable care that YOU can trust.

An excerpt from Atul Gawande's 2007 book, "Better", drives this point home even further, in which he discusses Donald Berwick's vision for improvement in health care through greater transparency:

"We should be routinely comparing the performance of doctors and hospitals, looking at everything from surgical complication rates to how often a drug ordered for a patient is delivered correctly and on time. And, [Donald] insisted, hospitals should give patients total access to the information. "'No secrets' is the new rule in my *escape fire," he said. He argued that openness would drive improvement, if simply through embarrassment. It would make it clear that the well-being and convenience of patient, not of doctors, were paramount. It would also serve a fundamental moral good, because people should be able to learn about anything that affects their lives.", p214.

*"Escape Fire" is the title of a recent documentary on American health care matters, that draws inspiration from Donald Berwick's famous quote to discuss means to "finding a way out, to save the health of a nation".

Check back in throughout the year to see other perspectives on transparency in health care. Again, asking the question: What does transparency mean for _____________?

(B) For providers - hospitals, physicians, nurses, specialists, etc.
(C) For payers - Medicare, Medicaid, private insurance, etc.
(D) For federal and state regulators
(E) For manufacturers of pharmaceuticals and medical devices
(F) For policy makers & elected officials
(G) For medical malpractice attorneys