ONC’s Annual Meeting, was held from May 31 through June 2, 2016 at the Walter E. Washington Convention Center in Washington, D.C. It was kicked off with a presentation by ONC Principal Deputy National Coordinator for Health IT, Dr. Vindell Washington. Dr. Washington did a great job of revving everyone up for the event and set the tone with a reminder that “Health IT is a team sport.” In his analogy, it doesn’t matter if you have Brady or Manning as your quarterback if there’s no one to throw the ball to. In other words, we all need to work together to be successful.
An underlying focus for the event was on the consumer, with a broad range of talks surrounding patient issues like privacy, data access, interoperability and engagement delivered from esteemed speakers who each shared insights on how all can benefit from healthcare IT.
Patient access to data is a major initiative that ONC, and other federal departments are focusing on right now. Dr. Karen DeSalvo, ONC’s National Coordinator for Health IT, and the Acting Assistant Secretary for Health at HHS said “consumers are expecting that we’re sharing their data, and HIPAA allows for it.”
Basically, it’s a patient’s legal right to obtain a copy of their electronic medical record and ONC is launching measures to ensure that patients and providers alike understand specifically what those rights are.
In a panel today moderated by Damon Davis, Director for the Health Data Initiative at the HHS IDEA Lab, panelists Lucia Savage, JD, Chief Privacy Officer at ONC and Deven McGraw, Deputy Director, Health Information Privacy, HHS Office for Civil Rights shared a new ONC awareness campaign, including videos and an infographic, that will generate more awareness about patient rights to access health data.
The sample video shown was made with input from focus groups, and seeks to break patient rights into easy to understand language that makes sense for everyone, including some cohorts who speak English as a second language (the campaign materials are available in Spanish and English). In the video a middle age man is requesting his electronic medical record so that he can connect the data to a new app that he’s downloaded to help him manage his heart health.
The videos and infographic can be viewed/downloaded at: https://www.healthit.gov/access
One of the key areas that these communications focus on is the fact that it’s not up to the provider to determine how the patient can use their data. Patients can request that their files be shared with anyone that they want: other providers, family members, or even digital tools such as mobile apps.
One key to this “unlocking” of patient data is the fact that the provider is no longer responsible for the security of your health information after it is sent to a third party. As such, patients are reminded to be diligent in only sending their health information to those they trust.
Patient data access rights are not new—they were a key component of HIPAA (The Health Insurance Portability and Accountability Act), which was passed in 1996.
During another panel Jocelyn Samuels, Director, HHS Office for Civil Rights spoke about ONC’s role in helping to enforce HIPAA and patient rights, and how they are on a mission to “free the data” so that patients can direct their records to providers, apps and researchers as they see fit.
During a fireside chat interview with Karen DeSalvo, Kathleen Sebelius, the former Secretary, HHS said that she sees the Federal government’s commitments as being a strongly bipartisan endeavour. It was fascinating to hear her reminisce about the creation of ONC, the hiring of Dr. DeSalvo and the evolution of health IT in the US.
In the last two State of the Union speeches by President Obama, major healthcare initiatives have been launched. Last year it was the Precision Medicine Initiative, which seeks to use genomics, big data, advances in research and technology to usher in a new era of personalized and more effective medicine. Much of this hinges on the patient’s ability to share their data with researchers and apps in order to make this initiative successful.
This year it was Vice President Biden’s initiative, the National Cancer Moonshot that stood out. The Cancer Moonshot is intended to bring greater collaboration across all arms of Federal government along with private industry and researchers to break down silos, and share data to generate new ideas and new breakthroughs. They aim to achieve 10 years of cancer research innovation in the next 5 years—a seriously ambitious effort.
Here’s an overview of the Cancer Moonshot as described on their website:
“Ultimately, the aim of the “moonshot” is to win the war on cancer – to get to a point in the very near future when we are managing cancer the same way we might manage any chronic disease, such as diabetes or asthma. When we can finally stop the toxic therapies, such as chemotherapy and radiation that decimate the immune system, and instead, rally the full power of the immune system and the body’s natural killer cells to fight off the cancer the way they were designed to do, the patient is not only surviving the diagnosis, but living – even thriving – with cancer.”
It’s great to see the country’s leadership throwing increasing support behind data and IT driven innovations in healthcare. It’s also important to remember that even seemingly insignificant touch points in the system, such as sharing data with a patient or directing a patient to review their medical information online, can lead to advanced research opportunities and help us move towards highly targeted, and personalized treatments for disease in the future.
I’ll close with a quote from Dr. Jon White, ONC’s Deputy National Coordinator for Health IT: “No other industry has been more affected by research and science than healthcare.” These words ring true, and never more than the present.