Patients and Consumers Winners at TEDMED

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TEDMED may not give out an annual prize. But if it did, this year’s winner would be clear: the patient/consumer.

That may seem strange, given that the event hosted over 1,800 of the leading minds from the world of science, business, government, and even art. But while it wasn’t a meeting of the little guys, it was certainly for them – providing a clear signal about how much the industry is shifting toward patient-centered healthcare.

Or should it be called consumer-driven healthcare? As Jay Walker, chairman and curator of TEDMED, notes, “We have no word in English for somebody who engages in the wellness process.”

But whether the discussion was about patients or consumers, the dominant theme during the three-and-a-half-day conference was about empowerment through technology, access to information and greater involvement in one’s care.

The most forceful proponent of people power was America Bracho, executive director of Latino Health Access, a community health center in Santa Ana, Calif.

“We believe that people can and should lead the change they want to see in their communities,” said Bracho during the first session Tuesday evening, She explained that her center enlists people from the community as the “experts,” including those that needed care, since they had a stake in a successful program.

She told Harvey Fineberg, president of the Institute of Medicine, that empowerment isn’t only important for low-income communities, but all patients.

“All of us want to have our voice heard. And all of us will be at a better place if we are part of the change that we want to see,” said Bracho.

The belief in patient rights and responsibilities is shared at the highest levels of government. Ryan Panchadsaram, a senior advisor to the U.S. Chief Technology Officer at the White House, says that not only do patients have a right to their health information, but electronic health records are making it easier to access them. He has worked with Veteran Affairs Department to develop Blue Button, a way for patients to download an easy-to-read record, as well as Blue Button+, to help software designers develop apps to improve access.

“We have the tools, and we have the rights. With this room, we also have all the talent. So now it’s up to us to push forward and do amazing things with patient health data,” Panchadsaram said.

Throughout the conference, technology was highlighted as a key enabler for patients to gain more control over their information and care.

Dr. Amy Abernethy, a palliative care oncologist and former NASA programmer who is driving new approaches to utilizing Big Data as director of the Duke Center for Learning Health Care, is seeking to give people more power of the information they provide.

Sharing the story of a colleague and cancer patient who wanted to share and access her healthcare information but couldn’t once a clinical trial was shut down, Abernethy said what is needed is an information donation system that keeps people in control over how their data is shared.

“We need to give our data a second life,” she said, pointing out that unlike blood or money, data actually becomes more valuable the more it is used over time.

Dr. Susan Desmond-Hellmann, chancellor of the University of California, San Francisco, is also seeking to give patients more power of the information they donate by creating a sort of Google Maps for health. She is working on a program where providers can cross-reference a patient’s health data with a global information network to deliver more targeted care, but says the key is that patients drive the process.

“We need a new social contract,” in which patients supply their data for the greater good, so that the healthcare system can help them and their family, she said.

Expanding the meaning of modern health data, computer science professor Deborah Estrin, says consumers should also be able to tap into and analyze information collected by mobile carriers, search engines and social networks.

The small data that forms our “digital trace” could help people monitor their own health by tracking subtle shifts in movement or activities, said Estrin, who is also co-founder of nonprofit startup Open mHealth.

While acknowledging the challenges of protecting privacy, a concern of some service providers, she believes the fast-growing app market for smartphones demonstrates that there is a precedent and even an incentive system for developing such a market.

Estrin’s team at Cornell Tech is building prototypes to demonstrate the power of small data, and has set up a site where people can urge their service providers to package their small data.

Several other speakers were involved in patient-centered online movements, using technology to challenge the balance of power between medical professionals and patients. Sally Okun, a nurse, discussed how the social network PatientsLikeMe was helping to humanize the language of health. Jessica Richman co-founded uBiome, an open-source platform helping “citizen scientists” understand how microbes in their bodies affect health.

“One of you will win a Nobel Prize,” said Richman.

It was a comment clearly directed beyond some of the renowned scientists in attendance at TEDMED.


Photo of The Hive courtesy of TEDMED

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