By CLAUDIA WILLIAMS
Robust exchange of health information is absolutely critical to improving health care quality and lowering costs. In the last few months, government leaders at the US Department of Health and Human Services (HHS) have advanced ambitious policies to make interoperability a reality. Overall, this is a great thing. However, there are places where DC regulators need help from the frontlines to understand what will really work.
As California’s largest nonprofit health data network, Manifest MedEx has submitted comments and met with policymakers several times over the last few months to discuss these policies. We’ve weighed in with Administrator Seema Verma and National Coordinator Dr. Don Rucker. We’ve shared the progress and concerns of our network of over 400 California health organizations including hospitals, health plans, nurses, physicians and public health teams.
With the comment periods now closed, here’s a high-level look at what lies ahead:
CMS is leading on interoperability (good). Big new proposals from the Centers for Medicare and Medicaid Services (CMS) will set tough parameters for sharing health information. With a good prognosis to roll out in final form around HIMSS 2020, we’re excited to see requirements that health plans give patients access to their claims records via a standard set of APIs, so patients can connect their data to apps of their choosing. In addition, hospitals will be required to send admit, discharge, transfer (ADT) notifications on patients to community providers, a massive move to make transitions from hospital to home safe and seamless for patients across the country. Studies show that readmissions to the hospital are reduced as much as 20% when patients are seen by a doctor within the first week after a hospitalization. Often the blocker is not knowing a patient was discharged. CMS is putting some serious muscle behind getting information moving and is using their leverage as a payer to create new economic reasons to share. We love it.
On top of everything else, the Sony data breach revealed employees’ sensitive health information: Top Sony executives saw lists of named employees who had costly medical treatments and saw detailed psychiatric treatment records of one employee’s son.
Like last year’s revelation by AOL’s CEO, it shows US corporations look at employees’ health information and costs. By ‘outing’ the fact that 2 of AOL’s 5,000 employees had premature infants whose treatment cost over $1 million each, the CEO violated the employees’ rights to health information privacy.
Trusted relationships simply cannot exist if individuals have no right to decide who to let in and who to keep out of pii. Current US technology systems make it impossible for us to control personal health data, inside or outside of the healthcare system.
Do you trust your employer not to snoop in your personal health information? How can you trust your employer without a ‘chain of custody’ for your health data? There is no transparency or accountability for the sale or use of our health data, even though Congress gave us the right to obtain an “Accounting for Disclosures (A4D)” for disclosures of protected health data from EHRs in the 2009 stimulus bill (the regulations have yet to be written). And we have no complete map that tracks the millions of places US citizens’ health data flows. See: TheDataMap.
This is a request for help finding people who have had bad experiences with online health resources.
Let me first say that the internet is often a positive force in people’s lives.
My own organization’s research can paint a rather rosy picture: teens are mostly kind to each other online, technology users have more friends than those who stay offline, more people are online than ever before, etc.
But there is another side to the story.
Pew Internet has also documented the fact that, among other groups, people living with disability and those living with chronic health conditions are disproportionately offline. Some people have only dial-up or intermittent access, like at the library or a friend’s house, and therefore miss out on important conversations or information.
The internet can also transmit false or misleading information. A 2010 survey found that 3% of all U.S. adults said they or someone they know has been harmed by following medical advice or health information found online (1% minor, 1% moderate, and 1% serious harm). Thirty percent of adults reported being helped.
There are emotional pitfalls online, too. A 2006 Pew Internet survey found that 10% of people seeking health information online said they felt frightened by the serious or graphic nature of what they found online during their last search.
It’s the kind of event where you might find yourself (as I did) seated between the Surgeon General and a Nobel Prize winner in Chemistry, with a singer/actor/model type across the table. Yet somehow, everyone finds common ground.
Once again, a who’s who of people descended on San Diego for TEDMED – three days packed with smart, provocative folks discussing how Technology, Entertainment, and Design play out in the healthcare field.
We’ve been attending TEDMED for a few years now, and this one might just be the best we’ve seen yet. From my perspective – an engineer at heart who’s devoted the past twelve years to growing a healthcare technology and communications company – TEDMED boiled down to this: the challenge of managing a range of increasingly complex systems, the need for collaboration, and a clear call to action to effect change.
We’re not kidding when we talk about complexity. A few highlights: Dean Kamen (one of my former bosses and current mentors) of Deka Research & Development and David Agus of the University of Southern California made their respective calls for a more responsive regulatory environment in the face of more complex and sophisticated medical breakthroughs, as well as an approach for documenting the social cost of not approving them. Eric Schadt of Mount Sinai School of Medicine described the dizzying complexity of genetics the way an engineer might model a network – think of a GPS for your DNA – helping even those (like me) who can’t grasp the genetic system understand how it works and how personalized medicines interact with it.