Tuesday, May 5, 2015

Data With the Power To Help Heal Patients

A patient having his blood pressure taken by a...
A patient having his blood pressure taken by a physician. (Photo credit: Wikipedia)

Steven Keating’s doctors view him as a citizen of the future.

A scan of his brain eight years ago revealed a slight abnormality – nothing to worry about, he was told, but worth monitoring. And monitor he did, reading and studying about brain structure, function and wayward cells, and obtaining a follow-up scan in 2010, which showed no trouble.

But he knew from his research that his abnormality was near the brain’s olfactory center. So when he started smelling whiffs of vinegar last summer, he suspected they might be “smell seizures.”

He pushed doctors to conduct an M.R.I., and three weeks later, surgeons in Boston removed a cancerous tumor the size of a tennis ball.

Mr. Keating, a 26-year-old doctoral student at the Massachusetts Institute of Technology’s Media Lab, has pushed and prodded to get his medical information, collecting about 70 gigabytes of his own patient data. His case points to what medical experts say could be gained if patients had full access to their medical information. Better-informed patients, they say, are more likely to take better care of themselves, comply with prescription drug regimens and even detect early-warning signals of illness, as Mr. Keating did.

“Today he is a big exception, but he is also a glimpse of what people will want: more and more information,” said Dr. David W. Bates, chief innovation officer at Brigham and Women’s Hospital.

 Some of the most advanced medical centers are starting to make medical data more available. Brigham and Women’s, where Mr. Keating had his surgery, is part of the Partners Healthcare Group, which has 500,000 patients with web access to some of the data in their health records including conditions and test results.

Other medical groups are beginning to allow patients online access to the notes taken by physicians, in an initiative called Open Notes. More than two-thirds of the patients reported having a better understanding of their health and medical conditions, adopting healthier habits and taking their medications as prescribed more regularly.

Nearly five million patients in America have been given online access to their notes.

As an articulate young scientist, Mr. Keating had a big advantage over most patients in obtaining his data. He knew what information to request, spoke the language of medicine and did not need help. The information he collected includes the video of his 10-hour surgery, dozens of medical images, genetic sequencing data and 300 pages of clinical documents. Much of it is on his website, and he has made his medical data available for research.

Still, he said he encountered a medical culture resistant to sharing data.

“The person with the least access to data in the system is the patient,” he said. “You can get it, but the burden is always on the patient. And it is scattered across many different silos of patient data.”

Since his diagnosis last summer, Mr. Keating has become an advocate for giving patients all the medical data they ask for.

An effort to accelerate the adoption of open technology standards in health care, the Argonaut Project, began in December.

One detail in a yearlong study of Open Notes underlines doctors’ concerns; 105 primary physicians completed the study, but 143 declined to participate.

Still, the experience of the doctors in the evaluation seemed reassuring. Only 3 percent said they spent more time answering patient questions outside of visits. Yet knowing that patients could read the notes, one-fifth of the physicians said they changed the way they wrote about certain conditions, like substance abuse and obesity.

Evidence of the benefit to individuals from sharing information rests mainly on a few studies so far. For example, 55 percent of the members of the epilepsy community on Patients Like Me, a patient network, reported that sharing information and experiences with others helped them learn about seizures, and 27 percent said it helped adhere to their medications.

Mr. Keating has no doubts. “Data can heal,” he said. “There is a huge healing power to patients understanding and seeing the effects of treatments and medications.”

Mr. Keating says he believes that people will increasingly want access to their medical data, especially younger people reared on social networks.

“This is what the next generation, which lives on data, is going to want,” Mr. Keating said.

Taken from TODAY Saturday Edition, The New York Times International Weekly, 02-May-2015