AMDIS Fall Symposium: Dr. Danny Sands on informatics and the engaged patient

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 - Danny Sands
Dr. Danny Sands

Throughout his career as a practicing physician with training and experience in clinical informatics, Danny Sands, MD, MPH, has become “increasingly appreciative of the role technology can play in the doctor/patient relationship.”

Sands, who will be presenting a session on “Informatics and the Patient-Provider Partnership” at the Association of Medical Directors of Information Systems (AMDIS) Fall Symposium in Boston next month, currently serves as chief medical officer at both Conversa Health and Kinergy Health and is an assistant professor at Harvard Medical School.

During his career he has served in a variety of other positions, spending more than a decade at Boston’s Beth Israel Deaconess Medical Center where he was involved in developing one of the nation’s first patient portals. He also takes pride in the fact that he has been using e-mail to communicate with patients since 1991.

So, Sands is strongly wedded to the idea that “we can leverage technology to change the nature of healthcare and of the patient/doctor relationship.” It’s a powerful idea, he said, but in order to achieve this both physicians and patients need to move beyond the traditional model of healthcare.

That model is one of “information asymmetry, where the doctors and the healthcare institutions hold all the cards,” Sands said. “They have all the information and all the knowledge, and the patients have nothing.”

While many physicians and healthcare organizations are comfortable with this model, Sands suggested it’s not tenable for two reasons. First, he said, it’s impossible for physicians to know everything there is to know about the fields they practice in.

“Second, [healthcare] information is no longer locked away,” he pointed out. “Patients are finding information on the Web or in medical literature, or by communicating with other patients. We are moving from a model of information asymmetry to one of information symmetry.”

That is going to be the key to healthcare going forward, Sands said, because it’s going to be about collaboration between provider and patient and “collaboration is about open information.”

Since 2007, Sands has often partnered with patient engagement activist Dave deBronkart, with whom he co-authored the book “Let Patients Help.”

It was at that time that deBronkart—also known as e-patient Dave (as in empowered, engaged, enabled and equipped)—came to Sands with stage 4 kidney cancer and a prognosis for survival of about 24 weeks from the time of diagnosis.

While he was being treated, deBronkart discovered the e-patient movement and became an advocate for patient engagement and participatory medicine. “I became an engaged, active patient in exactly the same way I would do research if I was buying a car or trying to solve a technical problem on my computer,” said deBronkart. “There is nothing magical about it—it’s just a responsible thing for a patient to do.”

People “perform better when they are informed better,” deBronkart said. “So it’s a mistake to keep people in the dark and this is where giving patients access to the medical record and health IT is a major enabler of the empowered, engaged patient.”

Both Sands and deBronkart pointed out that patient engagement is a two-way street. “[Providers and patients] both need to be willing to collaborate, and not all patients are going to be ready for this,” said Sands. “And we shouldn’t force them. But we should make it easier for them by lowering barriers and reducing the friction and providing them with the opportunity to get more engaged with their health.

“Because if we can do that, we will improve outcomes, improve patient satisfaction and reduce costs,” he said. “We’ll achieve that triple aim.”

Patients also need to meet physicians half way as well, Sands said, because it’s not going be all about “patient power.”

“Dave often says he is knowledgeable about his disease,” Sands said. “But that doesn’t make him an oncologist. I have to respect what the patient is trying to bring to the relationship and he has to respect what I bring as well. It’s called collaboration.”

But, physicians have the power to quickly shut all of this down, Sands pointed out, by building barriers that might seem low to some observers, but can be extremely effective at discouraging patient engagement.

For example, he wondered, if a patient needs to re-order medications, or schedule or cancel an appointment, why make them use the telephone? "If the only way for the patient to engage is by the using the phone, they’re going to be put on hold and it’s just not going to happen,” he said. “They’re going to give up because it’s just too painful.”

If patients are to be engaged in managing their own healthcare, “they need to be able to see their care plans and test results online,” Sands said. “If we make it hard to do that, that’s a barrier.”

Sands will be speaking at the AMDIS Fall Symposium at the Boston W Hotel on Monday, Oct. 20. Click here for registration details.