By David Harlow

The latest news story to examine the issue of patient access to implantable cardiac defibrillator data (a variation on the theme of “gimme my damn data”) is an in-depth, Page One Wall Street Journal story featuring Society for Participatory Medicine members Amanda Hubbard and Hugo Campos. They have garnered attention in the past – one example is another piece on Hugo on the NPR Shots blog about six months back. The question posed by these individuals is simple — May I have access to the data collected and/or generated by the medical device implanted in my body? — but the responses to the question have been anything but. It is important to note that not every patient in Amanda’s or Hugo’s shoes would want the data in as detailed a format as they are seeking to obtain, and we should not impose the values of a data-hungry Quantified Self devotee on every similarly-situated patient. Different strokes for different folks.

The point is that if a patient wants access to this data he or she should be able to get it. What can a patient do with this data? For one thing: correlate activities with effects (one example given by Hugo is his correlation of having a drink of scotch with the onset of an arrhythmia — correlated through manual recordkeeping — which led him to give up scotch) and thereby have the ability to manage one’s condition more proactively.

We can get copies of our medical records from health care professionals and facilities within 30 days under HIPAA — and within a just a few days if our providers are meaningful users of certified electronic health records (it ought to be quicker than that … some day). In some states now, and in all states sometime soon (we hope), we can get copies of our lab results as soon as they are available to our clinicians.

Continue reading “Dude, Gimme My Damn Data. Seriously.”

By David Shaywitz, MD

The human connection is threatened by medicine’s increasingly reductive focus on data collection, algorithms, and information transaction.

If you follow digital health, Rachel King’s recent Wall Street Journal piece on Stanford physician Abraham Verghese should be required reading, as it succinctly captures the way compassionate, informed physicians wrestle with emerging technologies — especially the electronic medical record.

For starters, Verghese understands its appeal: “The electronic medical record is a wonderful thing, in general, a huge improvement on finding paper charts and finding the old records and trying to put them all together.”

At the same, he accurately captures the problem: “The downside is that we’re spending too much time on the electronic medical record and not enough at the bedside.”

This tension is not unique to digital health, and reflects a more general struggle between technologists who emphasize the efficient communication of discrete data, and others (humanists? Luddites?) who worry that in the reduction of complexity to data, something vital may be lost.

Technologists, it seems, tend to view activities like reading and medicine as fundamentally data transactions. So it makes sense to receive reading information electronically on your Kindle — what could be more efficient?

Continue reading “Being Human”

By Suzanne Delbanco

In a world where health care costs are rising and consumers are taking on a growing share, it is critical they have easy access to understandable information about the quality and cost of their care.  While we have made decent strides in making quality data available, consumers still have little to no information about health care prices, making it difficult if not impossible for them to seek higher-value care.  Numerous studies and articles have explored this problem, such as a recent UCSF study, highlighted in JAMA, which found routine appendectomies can cost as little as $1,529 or as much as $183,000.  As PBGH Medical Director Dr. Arnie Milstein so eloquently stated in the Wall Street Journal, “Fantasy baseball managers have more information evaluating players for their teams than patients and referring physicians have in matters of life and death.”

Now Catalyst for Payment Reform (CPR), an independent, non-profit corporation working on behalf of large employers and other health care purchasers to catalyze improvements in how we pay for health services, has just released a suite of tools to catalyze price transparency.  The suite includes a first-of-its-kind Statement by CPR Purchasers on Quality and Price Transparency in Health Care, endorsed by several partner organizations, that takes plans and providers to task: give us price data by January 2014.

Continue reading “Health Care Purchasers, Consumers Need Price Data if We Are Ever Going to Get to a System of Value-Based Care”

By John Halamka, MD

2012 has been a challenging year for me.

On the personal side, my wife had cancer. Together we moved two households, relocated her studio, and closed her gallery. This week my mother broke her hip in Los Angeles and I’m writing from her hospital room as we finalize her discharge and home care plan before I fly back to Boston.

On the business side, the IT community around me has worked hard on Meaningful Use Stage 2, the Massachusetts State Health Information Exchange, improvements in data security, groundbreaking new applications, and complex projects like ICD10 with enormous scope.

We did all this with boundless energy and optimism, knowing that every day we’re creating a foundation that will improve the future for our country, communities, and families.

My personal life has never been better – Kathy’s cancer is in remission, our farm is thriving, and our daughter is maturing into a fine young woman at Tufts University.

My business life has never been better – Meaningful Use Stage 2 provides new rigorous standards for content/vocabulary/transport at a time when EHR use has doubled since 2008, the State HIE goes live in one week, and BIDMC was voted the number #1 IT organization the country.

It’s clear that many have discounted the amazing accomplishments that we’ve all made, overcoming technology and political barriers with questions such as “how can we?” and “why not?” rather than “why is it taking so long?” They would rather pursue their own goals – be they election year politics, academic recognition, or readership traffic on a website.

As many have seen, this letter from the Ways and Means Committee makes comments about standards that clearly have no other purpose than election year politics. These House members are very smart people and I have great respect for their staff. I’m happy to walk them through the Standards and Certification Regulations (MU stage 1 and stage 2) so they understand that the majority of their letter is simply not true – it ignores the work of hundreds of people over thousands of hours to close the standards gaps via open, transparent, and bipartisan harmonization in both the Bush and Obama administrations.

Continue reading “A Time for Boundless Energy and Optimism”