The final bell has rung on this years Health Datapalooza, which convened May 8-11 in Washington. It was the seventh annual get-together of number crunchers, developers, academics, policy makers, health advocates and entrepreneurs, who came from the public and private sectors to promote innovation around the availability and use of health data. Conceived by former Department of Health and Human Services (HHS) Chief Technology Officer Todd Park, Health Datapalooza grew from a one-day event with 45 attendees to nearly 2,000 attendees sharing insights on innovation in health data over three days. Ten themes emerged over the course of this years meeting.
Improved data access. Health Datapalooza was founded to help liberate data or at least drastically improve access to the massive amounts of health data created by the federal and state governments, payers, providers and others. The government continues to lead by example in this respect. In her keynote address, HHS Secretary Sylvia Matthews Burwell noted that seven years ago, we had a mere 10 data sets around Medicare cost and quality that were openly available to the public. Today, there are more than 2,100 datasets available on HealthData.gov. The Centers for Disease Control and Prevention and the Centers for Medicare and Medicaid Services are at the head of the pack, with each contributing more than 400 data sets.
Transforming data into information. The world seems to be drowning in health data, but the challenge is transforming those data into actionable information. That was heard again and again from speakers and audience participants, who definitely issued a cry for help. Just making data available and crunching numbers isnt enough. Skills, tools and other support are needed to help individuals (such as practitioners) and organizations identify what internal and external data are needed, gain access to and link the data sets, and perform various kinds of specific, meaningful analyses. Attendees made it clear that the federal government could play a bigger role in terms of technical assistance.
More and rapid innovation. The call for speedier innovation was brought home in the keynote address by Vice President Joe Biden. He challenged attendees to ramp up the innovation that has been seen in the past five years around open access and the sharing of health data with the hope of curing cancer by 2020 a personal and administration moonshot goal. Many stakeholders, it seems, have already internalized the call for action and have been working to move the innovation needle forward more quickly. For example, the American Medical Association (AMA) recently joined with Chicago-based incubator Matter to create the AMA Interaction Studio at Matter, a simulated health care space for physicians and entrepreneurs to team up on the development and testing of new technologies.
The value of transforming health data. It hasnt always been easy to sell the need for and value of mining health data to address organizations financial goals and return on investment, improve the quality of care and patient outcomes, and transform the ways in which health care does business. Maybe that value proposition has finally taken hold. Health Datapalooza is not just a convention for data nerds, policy wonks and technology geeks. Many speakers and attendees this year were from the highest levels of the government and the private sector, and their attendance indicated the value of their spending time at a meeting about health data. Examples included AMA Chief Executive Officer and Executive Vice President James L. Madara, MD, and Chet Burrell, who is the president and chief executive officer of CareFirst Blue Cross Blue Shield.
Improving data transparency. Health Datapalooza featured many innovations in the collection and reporting of health data, which have taken on increased importance in this new era of value-based purchasing and patient-centered care. This years meeting seemed to focus very little on data blocking, which was a hot topic for a while. The transition to quality-based systems and reimbursement will create new business models and reasons for organizations and technology vendors to share information, rather than hoard it to protect proprietary interests.
The importance of APIs. Application program interfaces (APIs) are one of the shiniest toys in the box. They are one way to allow third-party programmers (and hence, users) to bridge from existing systems to other software. The government has been promoting the use of APIs for several years in the belief that they provide the fastest and most innovative ways to create interoperability and applications for patient-focused care and patient engagement. Venture capitalists, entrepreneurs and developers have taken note, with many resulting and very cool APIs being featured at Health Datapalooza. On an interesting side note, most of the APIs at the meeting were based on Fast Healthcare Interoperability Resources (FHIR, pronounced “Fire”), which is one of the latest in the HL7 family of standards. FHIR is appealing because it is essentially an interoperability standard for health care data exchange based on a web services approach (similar to that used by companies such as Yahoo, Facebook and Google). As a result, it is easier for systems to exchange very specific, well-defined pieces of information rather than entire documents. This should make data exchange faster and more efficient, as well as more user-friendly for clinicians, patients and caregivers.
Renewed focus on the patient. Patient-centered care and patient engagement have been on the governments radar for the past several years. For example, they were key features of meaningful use and now the Merit-Based Incentive Payment System (MIPS). There was quite a bit of buzz around Health Datapalooza concerning how access to data can empower consumers. That can range from better care coordination (since consumers often are left out of the loop) to giving them access to medical records a byproduct of which is their ability to identify mistakes that could go uncorrected for years and result in deadly errors. Providers are now being asked to think differently about their use of data and systems to manage individuals and populations. This has created unprecedented opportunities to use data and analytics to enhance the management of patients and populations, as well as increase patient engagement and satisfaction. Patients and scientists also are leveraging technology to make patients active participants in studies, which is changing the face of research.
Increased privacy and security. The privacy and security of health data from the health business side and the patient side continue to be among the industrys major challenges. And there is a definite tradeoff between disclosing and protecting health care information, especially given the increasing number of data breaches and cyberattacks that are occurring. In addition, there is the need to use data to address the rising number of medical errors, which are among the major causes of deaths in the United States. The importance of these issues were addressed in individual presentations and sessions, as well as by the fact that a whole post-conference day was devoted to these topics.
Innovation challenges. Contests apparently are a big thing and the federal government unveiled several at the meeting. Secretary Burwell announced the governments first challenge to help develop a new medical bill design, A Bill You Can Understand. AARP and Mad Pow are collaborating with HHS to administer the challenge and work to draw attention to the impact of medical billing to patients. Two winners selected for design and a transformational approach to the medical billing system each will receive $5,000. The challenge is open until August 10 and the winners will be announced in September. The government also hosted a challenge along the lines of TVs Shark Tank. In the closing plenary session, a select group of tech entrepreneurs competed on the main Health Datapalooza stage to convince judges and audience members that they have the best consumer product that can turn health data into meaningful and useful tools for consumers and patients. Finally, six team finalists were announced for the first phase of competition for the Open Science Prize. Each received $80,000 to develop products to overcome hurdles in big data access and usage. The Open Science Prize is a partnership between the Wellcome Trust, the US National Institutes of Health (NIH) and the Howard Hughes Medical Institute to unleash the power of open content and data to advance biomedical research and its application for health benefit.
Not as much press coverage. In previous years, Health Datapalooza dominated the trade press for a few days. This year, not so much. The phenomenon may be explained by the Gartner hype cycle, which is a graphical representation of the life cycle stages a technology goes through from conception to maturity and widespread adoption. Using this model, Health Datapalooza has left the innovation trigger, the beginning of the cycle, and as well as the second segment, the Peak of Inflated Expectations. That means the meeting is heading toward the Trough of Disillusionment, which marks the middle of the cycle. While Health Datapalooza has a long way to go to reach the bottom of the Trough of Disillusionment, its not surprising that media coverage is starting to drop off after the meetings bright beginning and expectations. If the Gartner model holds true for Health Datapalooza, it should eventually head back uphill toward the Slope of Enlightenment, where many innovations will come to fruition in the future.