A Declaration of Data Independence Through the Lens of the Patient

Data Liberación is our battle cry...

Six years ago I wrote a blog on Independence Day. In 1776 the 56 citizens of the 13 British colonies signed their names to a document declaring that the King was abusing the colonies and violating the basic principles of human decency bestowed by God. So they declared independence from Great Britain and birthed the United States of America.

Abraham Lincoln said in a speech during his Senate race against Stephen A. Douglas of the Declaration of Independence, "This was their majestic interpretation of the economy of the Universe. This was their lofty, and wise, and noble understanding of the justice of the Creator to His creatures."



We are blessed to live in the greatest country in the world. We have had many struggles and challenges and have had to to overcome the sins of the past, but the Founders wisely put in place a constitutional framework that allows for transformational changes to occur, generally without bloodshed. The Republic is alive and well and actually improves every generation. I wish all of you a peaceful, safe, and joyous Fourth of July celebrating with family, friends, and neighbors. I also hope that you will participate in the first Data Independence Day.

We need to declare our right to access our own health data. For far too long health information has been locked up in paper tombs and sharing has been difficult. A long time policy goal has been interoperability and patient engagement. Todd Park (at the time the CTO of HHS, who then went on to serve as CTO of the USA) rallied the troops at Health 2.0 over five years ago, and Data Liberación is our battle cry...

Patients have been denied access to their electronic medical record. Previously HIPAA was fairly weak in this area. The HIPAA omnibus rule expanded the right to patient access now into the digital realm.  It also updated the notice of privacy practices healthcare organization are required to provide to patients notifying them of their rights under HIPAA.

Among one of the perhaps lesser-known changes to HIPAA are that, if asked, providers must send a patient’s medical record to whatever email address said patient offers. The provider is allowed to warn them of the risks and have them sign a form, however, they are not allowed to deny that request. This actually lays a foundation to go beyond the requirements of the HITECH Act, but a patient access HIPAA violation can be a serious offense. One of the largest fines ever for a HIPAA violation, $4.3 million, was levied for not providing patients access to their own data.

This year the perfect storm arose with the announcement just prior to the annual HIMSS event of a proposal for a significant lowering of the bar for patient engagement in Stage 2 Meaningful Use in 2015, and the fierce opposition from many stakeholders. I was the ring leader for the Blog Carnival during HIMSS and was fortunate to have the topic of patient engagement. Farzad Mostashari, Former National Coordinator at ONC, called for a day of action. That day has come!

I've written before that Stage 2 Meaningful Use contains a Core Objective that all providers must use secure electronic messaging to communicate with patients on relevant health information. Another Stage 2 Core Objective is that all providers must give patients the ability to view online, download and transmit their health information within four business days of the information being available. The specifics require that 50% of all unique patients are given access to information, and that five percent (down from 10% in the proposed rule) are able to view, download or transmit to a third party relevant health information. These measures require patients to take action in order for a provider to achieve meaningful use and receive an EHR incentive payment. This year as CMS backed off on many of the requirements in a proposed rule, especially around patient engagement it created quite a stir.

At the Health Datapalooza conference it was announced that July 4, 2015 would be Data Independence Day. Generous donors and tireless advocates combined to create http://getmyhealthdata.org. Farzad Mostashari along with former White House CTO Aneesh Chopra and several open-data and consumer health advocates spurred us into a new phase in the health data access movement. Now a coalition of patient advocates has launched the Get My Health Data Campaign just in time for Data INdependence Day to support patients in asking for, getting and effectively using their digital health data.

This is all backdrop for where this gets deeply personal for me. A couple weeks ago I was in Boston for an invitation-only meeting on developing a national Health Information Technology Platform supporting Substitutable Apps known loosely as an “App Store for Health." The meeting brought together key stakeholders from industry, government, academia and the public sector to follow up the work begun six years ago at the ITdotHealth meeting. The meeting was moderated by one of my healthcare heroes Atul Gawande. I was scheduled to present on FHIR and talk about how the technical architecture of the future will support clinicians and patients have granular data level access to their health information. Unfortunately, on my way to the meeting I suffered a heart attack, fell and hit my head, and spent a week in the hospital. Fortunately, I was at an excellent world class academic medical center which is also one of the top cardiac centers on the planet. I received excellent care.

Unfortunately, I was never advised of my rights under HIPAA nor provided a copy of their notice of privacy practices (I actually never saw or signed any forms or documents at all during my stay). I have asked for but have not received an electronic copy of my medical record and am still waiting to receive all of the paper records. Remember that HIPAA requires them to provide an electronic copy of my medical record if they are capable of producing it. But the only way to request a copy of my medical record is by downloading a form from their website, printing it, signing it, and sending it by fax (you know that new-fangled health data transport mechanism). Then it will take up to 60 days to be sent.

When asking for an electronic copy I was told they did not have this capability. They do have a patient portal, where you can easily pay your bill, but health data access is extremely limited. They state that "The only way to export this information from the portal is to use the print option. There is no option to save this information to another document/system. Also, your complete medical record is not available on the portal." After being stabilized and able to travel home to Oregon, I followed up immediately with my PCP, cardiologist, and therapists; however, I had to piece together and incomplete medical record which could scanned into the EHR.

This is truly a call to arms. Every patient in this country should demand their rights under HIPAA and obtain a copy of their medical record, electronically if at all possible. Like the brave patriots from the Boston Tea Party it is time to take a stand...

FHIR and the Future of Interoperability

There is growing interest in the health care information technology community in an emerging data exchange technology known as FHIR (pronounced “fire”). Last year we held a webinar on the topic with Dr. John Halamka, CIO of Beth Israel Deaconess Medical Center; Keith Boone, Standards Geek at GE Healthcare; Janet Campbell, Software Developer at Epic; and Arien Malec, VP, Data Platform and Acquisition Tools at RelayHealth. Now I am following up with another great webinar (register for free HERE) with a great panel including Dr. Michael Hodgkins, CMIO of American Medical Association (AMA); Dr. Doug Fridsma, MD, CEO American Medical Informatics Association (AMIA); Dr. Charles Jaffe, CEO Health Level Seven (HL7); Jeffery Smith, Senior Director of Federal Affairs, College of Healthcare Information Management Executives (CHIME); and Mario Hyland, Senior Vice President AEGIS.net, Inc. You won't want to miss this...

Healthcare Analytics Gets a Major Funding Boost and Kaiser Chooses a Vendor

Data warehousing and analytics company Health Catalyst has raised $41 million in a series C funding round led by existing investor Sequoia Capital reports the Wall Street Journal. The investment enables Health Catalyst to further build out its healthcare analytics platform and assist its clients in systematically and permanently improving efficiency and effectiveness in care delivery. The company plans to invest $50 million in product development over the next two years, including production of the next 200 advanced content-driven clinical applications on its roadmap. This $50 million will be money well spent if Health Catalyst is going to continue to take on giants like IBM, Oracle, other analytics vendors, and also the large EHR vendors that would like to keep big slices of the health data analytics pie.

"We are thrilled that our existing investors chose to continue their strategic relationships with us, leading the way to major innovations for US healthcare,” said Health Catalyst CEO Dan Burton. "As more healthcare organizations are coming to understand, data warehousing and analytics are foundational to their success under new payment and risk models." This latest round brings the total amount raised by Health Catalyst to nearly $100 million. Last year, the company was one of the top digital health investments, according to Rock Health's 2013 Midyear Digital Health Funding Update.

Introductory Video to Health Catalyst

A year ago Health Catalyst increased its Series B round by $8 million, with participation from Kaiser Permanente Ventures, the corporate venture capital arm of Kaiser Permanente, and CHV Capital, a venture capital fund guided by the strategic objectives of Indiana University Health, Indiana’s largest healthcare system. Indiana University Health had chosen Health Catalyst reporting and advanced analytics solutions and built out an enterprise data warehouse in just 90 days. Regarding the investment last year Kyle Salyers, Managing Director at CHV Capital, said, "Healthcare data warehousing and analytics is a necessity in order to succeed in the future of healthcare. It will bring actionable information to the point of care and to administrative leadership. We and our colleagues at IU Health see Health Catalyst as the market leader in delivering a data warehousing platform and analytic accelerators with scale, flexibility, speed to deployment, and ultimately a tangible return on investment."

Now Health Catalyst has also announced that Kaiser Permanente, the nation’s largest healthcare delivery system, operating 38 hospitals and employing more than 17,000 physicians serving 9.1 million members, is also adopting the Health Catalyst technology platform improve quality, eliminate waste and lower costs. This brings the total of company’s clients now operating over 135 hospitals and 1,700 clinics that account for over $130 billion in healthcare delivered annually. This is a substantial piece of the health data analytics market and Health Catalyst is certainly one to watch. Last year Chilmark Research named Health Catalyst the highest-rated overall solution in the Chilmark 2013 Clinical Analytics for Population Health Market Trends Report, calling the company a "clear standout." Also research firm KLAS claimed that Health Catalyst’s platform is a "newer and more effective way to approach EDW" in the report Healthcare Analytics: Making Sense of the Puzzle Pieces. KLAS gave Health Catalyst the highest performance rating (90) in the category of healthcare analytics companies, which also included Deloitte, Explorys, Healthcare Data Works, IBM, Oracle, Microsoft, SAP, and Teradata.

Todd Cozzens, venture partner at Sequoia Capital, told Healthcare IT News in an interview last year that Health Catalyst is better than "the IBMs and Oracles of the world."

"It's much more intuitive, much more clinically focused," Cozzens said. "The other piece is this incredible content they have around waste reduction, LEAN process, Six Sigma. You take these two core competencies, and it goes way beyond an electronic data warehouse. It's a performance management and care transformation system all in one."

As Zina Moukheiber points out in Forbes, Health Catalyst is muscling its way into Oracle and IBM territory. But Health Catalyst is developing data management tools that are uniquely suited for health care with laser focus on this industry. “Clinical data is so much more complicated that managing bank accounts or shoe sizes,” she quotes Dan Burton as saying. She also points out that Oracle typically captures data and converts it into a specific format, whereas the Health Catalyst late-binding architecture allows for more flexible manipulation of data aggregated from electronic health records, thus making its system faster to implement, and easier to query.

I have called 2014 the Year of Health Data Analytics and said that I believe that we are moving through three phases: data capture, data sharing, and data analytics. Data capture and sharing have been driven primarily by meaningful use incentives, while analytics will provide the ROI from these investments. It is the ability to do interesting and useful things with these data that will build out the infrastructure to support new payment and care delivery models. Business intelligence and analytics tools will be critical in order to thrive in the new healthcare marketplace. Much of the success of these analytics platforms will depend on the underlying architecture and the late-binding data warehouse model used by Health Catalyst holds the most promise today.

(full disclosure, I have provided strategic advising services to Health Catalyst).