Today’s #Path2Cures panel is a great reminder that patients need to be at the heart of all we do.
— Nick Valeriani (@njvaleriani) June 24, 2014
Dr. Martin Harris, Chief Information Officer of Cleveland Clinic, has the best idea about how to cope with HIPAA that I’ve heard in a long time: Give patients the chance to opt out of the system and manage their own data.
Harris was one of 10 digital health experts who spoke at a Path2Cures hearing Tuesday about digital health in the House. The House Energy and Commerce Committee held its second roundtable on the topic, and I have to say it was one of the smartest and snappiest conversations I’ve heard in a long time. You couldn’t have asked for a better group of people to represent the cause of innovation in healthcare.
First each person gave individual pitches about why we need more entrepreneurs in healthcare, actual interoperability among EHRs, and a map to patient engagement. Then representatives started asking questions.
At one point when the conversation had shifted to data and business models, Harris pointed out that the focus needs to stay on the patient. He explained what happened when the Cleveland Clinic first adopted the Open Notes model 10 years ago. As soon as a doctor finishes with an exam, the notes from the visit are online.
“First I got nothing but telephone calls from patients, ‘What in the world are you doing putting this on the Internet?’ Three years later it was, ‘Why can’t you release these results faster?’ And now it’s, ‘Why can’t everything be there?'” he said.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
Harris recommended this change to make HIPAA less of burden for everyone: Let people opt out of it.
“People should have a clear reason to do that, but there should be a menu of services and a person could push a button and take on personal responsibility for the data,” he said. “This will help us find the patients who will help us redesign the healthcare system.”
Everyone had a different reason why patients should be the ones to own and control their own health data.
Jonathan Bush of AthenaHealth said that making health data portable would make it easier for consumers to find doctors who understand how healthcare is changing.
“The ability to port your info and cut out health providers who have shaken your trust is a good idea,” he said.
Dr. Mark Blatt, Worldwide Medical Director of Intel Corp., agreed that people should be in charge of their own healthcare data. He was the perfect foil for Bush: just as passionate as the AthenaHealth CEO, but with a completely different speaking style. His version of “give me my damn data” is: You are the best fiduciary for your own healthcare data.
Blatt suggested that a new law making test results available to all patients should require labs to deliver results — as in sooner than 30 days. He also endorsed the Open Notes approach.
“Among the patients who opened a note, there was 70 percent improvement in med compliance; this is a policy change we could make,” he said.
Get rid of the paternalistic approach to privacy
Congressman Phil Gingrey, MD, who practiced as a doctor for 30 years, said he was all for digital health but the big barrier in his mind was privacy.
Dr. Joe Smith of West Health pointed out that particularly after the Edward Snowden revelations, people have decided that government can’t manage privacy at this point. He said that the majority of patients are willing to share their health information anyway.
“Perhaps we, in trying to protect the patient, are creating a system we and they can’t afford,” he said.
Dr. Brian Druker, Director of the Knight Cancer Center at the Oregon Health and Science University, agreed that outdated worries abut privacy are limiting research and hurting patients in the long run.
“What are you trying to prevent? The reality is that the information is going to get out there,” he said. “As we think about privacy, we also have to think about access to data that would accelerate our ability to get research done and get cures to people faster.”
Anne Wojcicki, CEO & Cofounder of 23andMe, agreed that the privacy concern people have is not that their data will get out but that they know who has access to their data.
“Once it’s in the hands of the consumer, there should be really, really clear transparency about who can use the data, and there should be severe penalties if it’s not being use appropriately,” she said.
It’s a journey not a status change
In these conversations about engagement, people sometimes get hung up on the fact that there are all different kinds of patients with all different levels of interest, education, access and ability to pay. Gina Gavlak, RN, BSN, Chair, National Advocacy Committee for the American Diabetes Association, urged the panel not to let this complicating factor slow down progress.
“We’ve never been active participants before, we’ve just been told what drug to take when,” she said. “Now we are expecting people to step into an area where they’ve never been before, so we have to know they will need help getting to the level where they can engage.”
