MedCity Influencers

Trust, privacy, and our American pandemic 

Health information exchanges know about the hard work of building trust by delivering value in healthcare. They have been in these trenches. They need a seat at the table with our state public health leaders as America works to safely reopen.

We know what to do. The question is: Can we do it, as Americans, as citizens living in a time of great divide and distrust?

Contact tracing — the public health process of test, trace, isolate — is our most powerful tool in helping the country emerge safely into a new normal of living with Covid-19. It has worked in our past; and it is working today in other countries. Legions of new contact tracers and case investors are being hired, more than 10,000 people just here in California, and trained on how to make the calls and track information.

Are health leaders investing at the same time in systems that build trust and help contact tracers succeed in these troubled times?

Reports indicate that contact tracing programs are already struggling significantly. “The cases are rising so rapidly, that we cannot even do contact tracing anymore. I don’t see how it’s possible to even do that,” Dr. Peter Hotez, from Baylor College of Medicine told CNN. In Florida, Miami-Dade County reports it isn’t able to get COVID-19 case data from the state and a lawmaker wrote a scathing review of his own encounter with a contact tracer. Contact tracing teams have been lagging behind cases in San Diego, Nevada and Texas. In Riverside and New York, reports are coming in of difficulty building cooperation and trust with patients.

These operational hurdles are being paired with an increase in contact tracing scams. As Michael Osterholm, PhD, MPH, one of foremost experts on infectious diseases, told USA Today, “The world is full of scammers. If I called anybody and said, ‘Hi, I’m from the Health Department, and I’m here to help you. I’m here to tell you that you have been exposed to COVID-19. I can’t tell you any more than that, but you need to shelter in place for the next 12 days.’ That means if you have a service job, you can’t go. How many people are going to actually believe that? How many people are going to act on that?”

It’s not enough to wish for more community trust. Public health leaders need to earn it. And they do that by being modern, data-driven, technology-savvy, valuable, and useful to citizens. It is time to help them catch up quickly after decades of underfunding and neglect.

Health information exchanges (HIEs) are a largely untapped resource that should be put to work as part of this investment. Many states, including California, have done the very difficult work of building large networks for safe delivery of health data over the past few years. It is far from easy to convince competing hospitals, health plans, and medical organizations to share. It is a painstaking process of building trust — of convincing people to change long-standing policy, to overcome fear, to see that there is value for everyone when healthcare works together. It’s something our state has been able to do for 21 million Californians.

Many large HIEs now have data on Covid-19 testing. They have real-time hospital admit and discharge notifications. They have valuable data for public health work, including clinical background for patients to support case investigation and demographic and contact information for contact tracing. They are neutral nonprofits stewarding this information as safely and considerately as possible.

Today, there are no public health departments using California’s health information exchange to support contact tracing in California. This needs to change, quickly.

I believe public health departments can use health data to build trust with their communities, to deliver value, to save people time, and to save lives. Imagine a contact tracer who is alerted to immediately text, call, and email you if you test positive, who can verify their identity over the phone, who can collaborate with your hospitals and doctors, who has access to just the information they need to do their work, who can share data transparently with you about what they are doing — a contact tracer whom you trust.

HIEs know about the hard work of building trust by delivering value in healthcare. They have been in these trenches. They need a seat at the table with our state public health leaders as America works to safely reopen. Let’s work together to earn the trust of our citizens and show everyone that we as a country can build a stronger community from this pandemic crisis.

Source: Getty Images, Peter Howell

Claudia Williams is CEO of Manifest MedEx, a California nonprofit health data network. She was previously Senior Advisor, Health Innovation and Technology at the White House where she led data sharing, care transformation and precision medicine efforts.

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