Electronic Health Records

Integration & Interoperability News

How Patients Factor in the Health Data Exchange Equation

By Frank Irving

- While much of the discussion around health data exchange focuses on compatibility between hospital IT systems or among multiple providers, it’s often overlooked that patients can greatly benefit from access to information contained in EHRs.

Senator Susan Collins chairing the HELP Committee hearing on patient access to medical records

“I think one of the reasons that fewer than half of patients access their medical records and only 26 percent use a portal more than once is that they get something that doesn’t mean anything to them,” said Sen. Susan Collins (pictured), a Maine Democrat who chaired the Senate HELP Committee’s Sept. 16 hearing on achieving the promise of health IT. “Worse yet, if you can’t get [online] in the first place, all the interoperability in the world is not going to help you.”

Raj Ratwani, PhD, scientific director at the National Center for Human Factors in Healthcare in Washington, pointed out during his testimony at the hearing, “The use of these systems is going to be critically dependent on the value that the patient actually receives from them.” He noted the example of smoking status being a required data point for a five-year-old patient. “Unless we make these tools absolutely useful for patients, we’re going to see complete under-utilization by the public.”

Another panelist at the hearing, Eric Dishman, general manager for health and life sciences at Intel, commented, “We keep saying it’s not just about the data, it’s about information. We’re going to need to aim these systems at probably 10 different levels of health literacy and make sure that we’ve got rules in place to do so. I’m a social scientist — I study doctor-patient interactions — and I can barely understand these things.”

However, there is cause for optimism. Kathy Guisti, executive chairman of the Multiple Myeloma Research Foundation (MMRF) who has been living with blood cancer for nearly 20 years, said her foundation built its own data bank to track genetic changes in patients and their responses to treatment. A clinical network helps patients enroll in clinical trials suitable for them. As a result, new drugs have been approved to treat the disease and survival rates have tripled in the time since Guisti was first diagnosed.

MMRF encourages patients to get online to review lab results and to collaborate with their doctors to identify and act on important trends. Patients with myeloma can often do that by tracking just one biomarker.

“The moment that you get them into the EHR, looking at data to track one number where they’re not so overwhelmed — now they’re in and they’re starting to use it,” explained Guisti. “At MMRF, for our newly diagnosed patients, 75 percent of them felt they were highly knowledgeable because they were getting these numbers. If they weren’t working with an EHR, only 45 percent felt they were knowledgeable about their disease.”

She added, “This is an interesting time when we’re trying to build awareness of the importance of precision medicine and building a million-patient cohort. It’s very apropos to what we’re trying to do here, which is to know your data, make sure you are getting the most robust data set, integrate it, aggregate it, and we’ll all benefit.”

Sen. Tammy Baldwin (D-WI) expanded the discussion: “In terms of driving patient engagement, it seems like this is a huge opportunity [to develop] condition-specific devices that are user friendly so that patients are motivated to use them.”

Dishman agreed, but also cautioned that standards will need to be developed for consumer-generated data. “We need to get ahead of that and not let it become the same bogged-down data swamp that we have now in trying to pull clinical data into the era of interoperability,” he said.

Ratwani predicted that development of open application interfaces would spur innovation in the area. “It will allow new entrants into the market to consume that data and build really great products that will service patients’ needs,” he remarked. “The more data that we can bring together, there will be a stronger source for us to better understand health outcomes and encourage good health.”