Tuesday, April 23, 2013

Give us our damn data!

Addendum on May 15, 2001.  I have found that I was in error regarding CHIA and the all-payer claims database.  Please see the comment by Commissioner Áron Boros on this post, which is reprinted in its entirety on a new post dated today.  My apologies to him and his agency.

ePatient Dave has created a worldwide call for patient to have access to their own clinical data.  His mantra is "Give me my damn data!" and there are calls to hear his rap whenever and wherever he travels.  Here it is, for those of you out of the loop:

Dave's plea is to allow patients and doctors to engage in a partnership of patient care.  He owes his life to his doctor, Danny Sands, and others who encouraged this.

Dave's call for action at the individual level has a societal analog.  What better place than Massachusetts, which took the lead on universal coverage, to adopt it?  But the state bureaucracy has not  followed through.

In 2010, the Legislature and Governor Patrick enacted a bill, Chapter 288, that required the collection of an “all payer claims database” by the Division of Health Care Finance and Policy.  As the name suggests, this database contains every health care transaction between insurers and providers in the state.  The numbers and patterns in this database explain more about our existing health care delivery system than has ever been assembled in one place.

The existence of this database offers the potential for all parties to study the actual transactions taking place in the Massachusetts health care system.  It permits testing of hypotheses with regard to payment models, clinical affiliations, and a variety of other pertinent matters with regard to the state's health care policy agenda.  Because Massachusetts took the national lead with regard to health care reform, it also offers potential value to the country as a whole.

A previous DHCFP commissioner asserted that the dataset would “allow a broad understanding of health care spending and utilization across organizations, population demographics, and geography.” Both that commissioner and the next one failed to act:  All that value remained trapped and hidden from view, burdened by unreasonable regulations regarding access.

I have to conclude that political forces from powerful interested parties, including those who benefit from the current payment system, kept the data under wraps.

The stewardship of the database is now in the hands of a newly formed state agency.  This one is not part of the administration.  It is independent.  Here's the background from the Governor's website:

In August 2012, Governor Patrick signed landmark legislation that launches the next phase of health care reform. Implementing the reforms in the legislation, which takes effect Nov. 5, will result in nearly $200 billion in savings over the next 15 years by moving to alternative payments, increasing transparency, addressing market power, promoting wellness, enacting malpractice reform and supporting health information technology. Implementation will include a number of state agencies, along with cooperation from providers and insurers, non-profit organizations, and input from and information delivered to the public.

An important part of the bill was to establish the Center for Health Information and Analysis as the successor agency to the Division of Health Care Finance and Policy:

CHIA is an independent state agency that collects health care cost and quality information and provides objective analysis of this data to assist in the formulation of health care policy.  CHIA maintains a number of the Division’s responsibilities, including the compiling of the state’s annual cost trends reports, managing the state health data repository, and monitoring the financial stability of hospitals and health plans.

Months ago, David Stephenson and I suggested:

Massachusetts universities and NGOs have the largest collection of health care researchers in the world.  It is time to make this database open and free of charge to those researchers.  Let them create hypotheses and test them — using real numbers.  Allow insurance companies and hospital systems, too, to view treatment patterns and finances to evaluate new policies and models of clinical care.  All this can be done safely and appropriately, because the law contains strict privacy safeguards.

The law, “to promote cost containment, transparency and efficiency in the provision of quality health insurance,” is a good one, but only if the data is really liberated. It must be automatically available to those who need it, when and where they need it, in forms they can use, and with freedom to use as they choose, while simultaneously protecting security and privacy.

Among the other states — Kansas, Maine, Maryland, Minnesota, New Hampshire, Oregon, Tennessee, Utah, and Vermont — that have created similar data bases, we know of none that have taken this approach to freeing the numbers to enable the information to be used for the greater good.  Instead, most states have a governing board or advisory committee that administers or provides recommendations on the reports to be generated from the databases.  That kind of government is a hold-over from the centralized control of another era, a form of government that inconsistent with a world of web 3.0.  

It is within the authority and power of the Executive Director and the Board of  CHIA to "give us our damn data!"  It is time.  Do they have the spine to stand up to those who wish to keep it hidden?


e-Patient Dave said...

HA! This thing won't leave me alone!

Well, it's a serious issue. Dr. Danny Sands is my primary, and a pioneer of health IT - in the 1990s he co-created the EHR and patient portal at BIDMC (and co-authored the first journal article on effective use of doctor-patient email). He and I were both participants in the now-famous OpenNotes study that documented the benefits of patients viewing the doc's actual visit notes.

And Danny makes the point: "How can patients participate [in their care] if they can't see what I see?"

There are many many other reasons why it's destructive to keep patients away from their records, not least of which is that most records contain errors, which is a disservice TO THE CLINICIANS who are supposed to read them.

My new book "Let Patients Help" talks about this from several angles. Of course, I co-authored it - with my doctor.

e-Patient Dave said...

btw, some credits are due for the rap:

1. It was penned by Keith Boone @Motorcycle_Guy, who works in health IT for GE.

2. The footage in this version is taken from the original of my talk at TEDx Maastricht 2011, http://on.ted.com/Dave

3. This mashup/remix was created by Brett Shamosh of Wellapps (an e-patient himself).

And lest anyone think this is all anti-doctor rebellion, see this mashup from "Jerry Maguire" by world-leading cardiologist Eric Topol: Show me the data!!!

So, yeah: what rationale IS there for keeping patients and families apart from their medical information?

Barry Carol said...


I read recently, but can’t remember where, that full price transparency, including actual contract reimbursement rates paid to hospitals, will be coming to Massachusetts starting October 1, 2013. I was wondering if you or any of your local readers know if there is any truth to this. It would be a very positive development if true, in my opinion.

Paul Levy said...

I haven't seen anything on that, Barry. Maybe others will offer information.

Pat G said...

Barry and Paul,

There are several requirements that may be included in the reference Barry read. here are a few- Ch 32A, Section 27, effective October 1, 2013, that carriers and 3rd party administrators provide the "real time" ["within 2 working days," for Oct 2013-Sept 2014]" estimated or max allowed amount, and estimated amount for which the insured would be responsible, for a "medically necessary covered benefit", along with some level of protection to the insured against charges exceeding the disclosed amount.
Also, Ch 12 C, Section 8, regarding annual CHIA reports, based on reports submitted by carriers and providers, on which the HPC is required to hold public hearings by October 1. (Final report is due after the hearings, etc.)
On another note, which is probably interesting to Paul, de-identified data collected by CHIA is required to be made available to researchers (!!!), in addition to providers, payers, and govt agencies, under Section 12(b) of Chapter 12C . .
Per a recent (2013) report prepared by Mercer for the Catalyst for Payment Reform and HealthCare Incentives Improvement Institute, which ranks all state laws on health care price transparency and disclosure, only Massachusetts and one other state (NH) were given an "A." HMMMM . . . .
best, Pat

Paul Levy said...

On your last point, there is no virtue in benchmarking Massachusetts to the substandard norm that is represented by all the other states.

On the other provisions of the law, let's see if and when they are actually carried out. One, for example, the part about the Division of Insurance assuring the credit-worthiness of physician groups to engage in risk contracting, in already being observed in the breach.

Sam Stearns said...

Great post. I believe our neighbors in New Hampshire have taken the lead here in terms of data transparency, at least for commercial claims. They have made comprehensive claims data available going back to 2005. The data can be requested from https://nhchis.com/

Anonymous said...

So exactly what is MA doing with this database which the taxpayers funded? (yes, they fund everything even if it is the staff time required to assemble and administer it). The public deserves some return on their money. Kudos for not forgetting about this and for continuing to hold feet to the fire, Paul.

nonlocal MD

Anonymous said...

How can the common patient join the rant for open data? Would be great if data for the whole country was available, not just on a state basis. Logic - more than 50% of payments process through the government. Couldn't that payment system be the initial database? Code definition already exists for any service. Negatives on implementation are either political or a lack of imagination by data programmers.

Pat G said...

Paul-You're absolutely right on both points you made in response to my post. As to the second point, it seems that "we" (the body politic/or constituents) need to find a way to get the DOI in the right place to be able to do what it needs to do to properly carry out the law. As you might expect, my solution would be to enable review of the contracts that re-allocate the risk by experts who understand "creditworthiness" and bankruptcy laws. . . .(Hire more lawyers (:)!) Of course, since the contracts won't be made available for review by the carriers and providers, that solution is already dead in its tracks. . .
On another note, I would like to refine another point in my earlier comment. The data access provided to researchers is still not "free", as you recommended in your earlier blog. But it appears that the process required to obtain the data should be more open under the new provision. Any reaction to that concept????

Anonymous said...

The roadblocks erected by the system are actually quite incredible even when the patient and care providers all want to share the data and all have high health literacy.

Here is my Alice in Wonderland story ...

I am a physician on the faculty of a major medical center and as a resukt have access to the medical center's EHR to care for my own patients. My spouse is not a physician but is on the faculty of the same institution and quite knowledgeable about medical terminology and physiological processes (indeed more so than many physicians!). I am also my spouse's legal health care proxy (though he is totally capable of making his own decisions at present, he clearly has shown legally that he trusts me with his medical information).

My spouse has recently had significant health problems that have required consultation at another facility and several admits to our institution, Labs have been drawn as an outpatient and he is being managed outside the hospital when possible since I have a greater ability to address his nursing and medical needs than most spouses would have.

Unfortunately, I have no ability to access his lab and imaging results except by having him make a request to medical records for each one, pay for xeroxing and then wait up to 14 days for it to be released to him so he can show me to help coordinate care. To do this on an ongoing basis when one is having multiple tests over time is unwieldy. Similarly to have these results transmitted to consulting physicians elsewhere has required multiple requests for release and then hundreds of pages have been faxed (and likely go unread).

I have asked whether my husband can give permission for me to login to the EHR and access his results as I would for any other patient. I was told that regardless of my husband's wishes that it could not access his electronic record and that if I did so I would be subjected to disciplinary action, it is frustrating to suspect that his potassium may be critically low, to know that blood was drawn and results are likely available and that my only recourse is to keep bothering his physician to log in to the computer to see if I need to take him into the ER. (I was told that if we weren't confident that the doctor would let us know the results that perhaps we should find another doctor, but how many physicians will be as motivated to obsessively check my husband's results like I will? I also want to be able to summarize key aspects of his course and results for the consulting physician but the printed version of the chart that we are able to request is even more cumbersome to read (if that's possible) than the EHR computer screens. Thus, I have been struggling to put together a time course of medications and their effects from the printouts knowing that I could easily achieve the same task in half the time by logging into the EHR.

Am I the one who's psychotic or is something wrong with this picture.?!?

Anonymous said...

Sorry, but you're psychotic...

Why don't you find a physician you trust and let them manage your husband's care?

There's reason why we don't manage our family members' care, particularly when they're ill. I found that out when as a resident I took care of a respected senior faculty member's wife. He sat on her at home for a couple days too long while she developed post op complications. When he brought her in, he confessed to me, "I don't have any perspective."

The hint that you've lost perspective is that you speak of checking his potassium levels "obsessively". It sounds like you're trying to compensate for loss of control that comes with serious illness. Let's be serious, who is going to let someone with potentially 'critical' hypokalemia walk out of their office? Particularly if that person's spouse is fellow physician and will know exactly who to blame if the SHTF?

But let's pretend you're correct and your husband is one of the 5% who will become hypokalemic on moderate HCTZ doses and furthermore is one of the few who develop arrythmias with K between 2.5 and 3, i.e. before clinical sx such as muscle weakness become apparent.

Here are your alternatives...
1) Make an arrangement with your husband's current doctor to allow you to call his office for lab results.
2) Get a concierge physician who you pay in cash to take on the extra work of managing your anxiety in addition to your husband's health.
3) Sport the $200 to get an iphone single lead EKG so you can look for a long QT, etc.
4) Take a deep breath and realize that you can't control all risk, that we're all going to die sometime and that dying of an MI at home beats the snot out of CDiff in house or infected bedsores in a nursing home every day and twice on Sunday.

You're welcome.