By Allison Proffitt & Phillips Kuhl

June 9, 2014 | Of the themes at the Healthdatapalooza event last week in D.C., the concept of transparency and shared data returned to the forefront time and again. From legislators, apps developers, and researchers, the refrain continued to be free data, easily accessible. Patients want and deserve their data, and technology is positioned to make that happen.

Jeremy Hunt, Secretary of State for Health in the UK, stressed that safety—whether in hospitals, or on airplanes—depends on creating an atmosphere where everyone can speak out. He related steps taken in hospitals to ensure that anyone could easily report a patient safety event. The best way to improve standards in healthcare is transparency, Hunt said, and technology has a crucial role to play in establishing that.

Following Hunt was the boundless energy of Jonathan Bush, co-founder and CEO of athenahealth. He warned against Upper Right Quadrant Syndrome, a disease he said is spreading to healthcare from financial services, petroleum, and other industries. The answer, he says, lies in making money, while charging individual consumers less: expanding markets, increasing volume and letting go of some smaller services and customers.

The curation of care is coming, Bush said, and for a while, it will be scary to be alone in the space, but soon people will join you and it will lead to disruption in the healthcare system.

Atul Gawande appealed to the physicians and highlighted their challenges. We’ve turned doctors and nurses into data entry technicians, he said, and it’s demoralizing, exhausting, and not sustainable. Technology must provide solutions.

Keynote speaker Vinod Khosla agreed and proposed that both humans and machines are far more accurate together than apart. It’s not a matter of machines replacing doctors, he said, but of learning to access the strengths of both. Khosla’s paper, 20% Doctor Included, summarizes his vision for healthcare technology.

Francis Collins, Director of the National Institutes of Health, emphasized that NIH is very much on board with the open access movement, and he encouraged the audience to continue to push for open science. NIH values rapid information release, he said. He referenced the Global Alliance for Genomics and Health and promised that clinical trial findings would soon be available on ClinicalTrials.gov.

Next-generation sequencing is changing medicine, he said, and the changes are only coming more quickly. He listed current costs to sequence a whole genome at $4,008 (though AllSeq’s marketplace lists the price as low as $1,650), and guessed that the $1,000 mark will be widely available this year.

Thankfully, with all this call for technology solutions, there were a host of tech companies and app providers waiting in the wings.

CareSync presented during the keynote session and garnered a lot of conversation on Twitter. The tool helps you consolidate medical records for yourself and any other family member you coordinate care for, schedule appointments, and track medications and appointments. One in three CareSync users found significant errors in their medical charts, COO Amy Gleason said, and more than half were able to avoid a duplicate test by having their records at their fingertips.

Purple Binder was mentioned specifically by Kathleen Sebelius, Secretary of the US Department of Health and Human Services. The company serves to connect health and community services in a comprehensive way, so whether a user needs a domestic abuse shelter or a food pantry, they can find what they need and all the relevant information quickly and easily.

Khosla gave a special shout out to Ayasdi for their data visualization tools that are changing the way we look at diseases and linkages. He specifically mentioned Ayasdi’s analysis of Type 2 diabetes, which won a Bio-IT World Best Practices Award in April.

The team at ProPublica won the Data Liberation Award for their work exposing pharma-physician payments, and making the data accessible, through the Prescribers series and the Prescriber Checkup tool. As more of the Sunshine Act rolls out, there will be more tools for exploring that data.

With a $1.9 million grant from the Robert Wood Johnson Foundation, the Health Data Exploration project, from the University of California, San Diego (UCSD) and the University of California, Irvine (UCI), aims to create a network of researchers, scientists, companies and others to catalyze the use of personal health data for the public good. The RWJF grant was announced at Datapalooza and the Network is seeking researchers and companies to participate.

A health data challenge—Code-a-Palooza—saw 10 finalists take on the Centers for Medicare & Medicaid Services (CMS) claims data that was just released. The developers designed tools that would help patients make sense of the data, and would support personalized health decision-making.

Three winners were named: Smart Health Hero by lyfechannel.com took first place; AccordionHealth.com took second place; and Myhealth.io by karmadata took third place.

Business Analytics

There was also much discussion from a healthcare business perspective about the best way to proceed in the changing environment.

For Accountable Care Organizations, there is a shift to a risk-shared payment model, where organizations are paid for outcomes rather than per activity. Rishi Sikka, SVP of Clinical Transformation, for Advocate Health, spoke of his company’s transition toward being an ACO about three and a half years ago. By the end of 2014, Sikka expects about 75% of the company’s revenue will be from risk-shared ACO activity. Early on, Advocate Health saw this as a data problem. They needed to be in a much better position to answer three questions: Do you know the current state of your patients? (Who missed an appointment, who is taking what medication and is that correct, etc.); Can you predict what will happen? (particularly in terms of the patient getting worse or any complications); and What can you do to intervene to improve the outcome, improve health and reduce cost?

Advocate Health formed a strategic partnership with Cerner and built a large data platform. They moved all of the information that was in different silos into a single repository with a single master patient ID. This brought together payment and claims data with clinical data from EMRs. They then developed software that was able to predict which patients were going to develop problems, and have found it to be at least 20% more accurate than other tools.

Sikka also commented on the typical model in which the most expensive patients account for a disproportionate share of the costs. Such a model ranks patients only in terms of their current costs, and by using a single dimension, it reduces complexity and information is lost. Some of the most expensive patients this year may be because of a catastrophic event, and depending upon the event, may or may not regress to the mean in terms of cost in the next year.

The industry really needs to understand patients in terms of costs and a measure of their wellness, whether or not their conditions are something that the healthcare provider is in a position to affect or not.

From the Patient, By the Patient, For the Patient?

But among all the data, the apps, and the bottom line, the patient voice was heard, albeit not as strongly as some would wish.

Andrea Downing, the patient advocate behind Brave Bosom and a breast cancer “previvor,” spoke at the event. Downing carries a BRCA1 mutation and chose to have a double mastectomy in her early 30s.

“[There were] times when I felt very concerned about the future we are creating,” she said of the Healthdatapalooza conversation. “But there were also moments where I started to feel hopeful about how we can solve practical problems in the BRCA Community and excited to return.”

Downing argued for patient inclusion. “I am not a market segment to be disrupted. I’m a human being and it’s my data!” she said in one of the event’s most retweeted quotes. “No data about me, without me.”

For patients, this is personal. We don't think about it as data, we think about it as a portrait of our suffering, she said.

Adriana Lukas, founder of London Quantified Self and a Tuesday morning keynote speaker, struck the right note: People are not data-cows to be milked for the aggregate data bucket, she said.

It’s clear that patients feel that way, and more and more data researchers seem to agree.