Improving Patient Access to Their Data

By Matt Phillion

As the healthcare ecosystem in the U.S. grows more complex, there continues to be a focus on strengthening outcomes, controlling costs, and improving data. Improved quality of healthcare data helps overall quality of outcomes. Yet many patients lack a perspective or understanding of what is being done with their data—and how those practices impact quality of care and can even lead to errors or poor diagnoses.

What should patients want to know about what’s happening with their data?

“It’s a very easy question to answer,” says Dr. Oleg Bess, CEO of 4medica. “What would you want to see from this data from your own perspective?”

Bess notes that the question isn’t just about what the data is, but who is using it. “I think at some point I’d like to have the knowledge of who is using the data, and control who I can give permission to view that data or take it away,” he says. “Much like social media or browsing data, in many cases we don’t have the knowledge of where the data set is being utilized.”

Controlling access to your data isn’t just about privacy, Bess says. “If I have a certain disease, a cancer, a condition that I really want investigated and would love to have my data used to treat that condition, for research or developing new drugs, I would love for that data to go to the right labs or institutions,” he says.

With more than 20 million cancer patients in the U.S., Bess says, many patients are interested in volunteering their data and experiences to aid in the creation of treatments, but there isn’t a formal mechanism for that right now. So 4medica has created a patient health record app with a user interface that enables the patient to assign their data, or even individual reports and documents, to a doctor or institution.

“There are so many clinical trials looking for patients to participate, and a lot of the information needed by those trials are hidden in hospital or lab data sets,” says Bess. “It’s incredibly difficult to extract that.”

Privacy has been paramount for a long time, which is important for patient safety. But protecting patient data also creates barriers when trying to gather information or to enable information sharing for greater accessibility by researchers, Bess notes.

“Once you’ve aggregated the data and shown the patient what their data set actually is, it becomes much easier for the patient to say, ‘Of course I want this information to go to a trial,’ or to identify a trial they want to participate in,” Bess says. “I think the biggest problem with this type of action is that the data is not readily available to the patient. If we can aggregate that data electronically, we’re in a different world.”

Patient data, patient education

Enabling patients to better manage their data begins with education.

The data is most usable for patient education when it is presented in a discrete format—a scan of a facts page is not as useful. But formatted properly and aggregated, “you’re getting this amazing capability of actually telling the patient the combination of certain test results indicate they should be talking with their doctor or a specialist,” says Bess. “In our app, we’re able to aggregate data from multiple sources.”

A good deal of information is available for aggregation, including eligibility for insurance or about particular specialists. However, Bess notes that there are some barriers, including labs that may not make data publicly available. “Each large institution feels like they own that data set, and there’s been a significant amount of blocking” access, Bess says.

Not sharing data isn’t always about proprietary information or secrecy—sometimes there just isn’t a great way to accomplish the sharing, Bess says. “We have some standards, but the standards are not well defined, so creating a data stream for taking information from one institution electronically and putting it in the same database as another for a patient is not an easy task,” he says.

The other huge problem, Bess notes, is when data for a particular patient comes in from separate hospitals, hospital chains, or labs, it’s not always easy to tell that the data all belongs to that one patient. There’s no unique ID for a patient who crosses organizational borders in this way.

4medica uses a state-of-the-art engine that leverages demographics to examine information from disparate sources, correlating data from individual patients as well as engaging in additional transformation of data, such as identifying similar tests between labs. All of this allows for identifying trends and creating a census of available data.

Improving data from the doctor/patient perspective

Often, Bess notes, limited access to data can lead to poor decision-making between providers and patients.

“Putting my doctor’s hat on, when I’m going to see a patient and making a decision about that patient, most of the time it’s an episodic data set I’m seeing, especially if this is a new patient,” says Bess. “It’s the test I ordered, or that came into my office and is sitting in front of me with that patient.”

In some cases, the patient brings information with them from previous visits with other providers, which often isn’t complete or up to date. Concurrently, it might contain a lot of bloat.

“Someone pressed print on the EMR and 120 pages of patient history printed out,” he says. “All I may need is five data elements in there, but it’s impossible to find.” Printouts of medical records can be repetitive, unintentionally hiding the relevant information under years of visits and test results.

“Things are not organized enough in this format for the information to be useful,” says Bess. “This remains a huge problem for physicians who are now asked to make decisions for the patient: Does this patient need surgery, do they need another test, can it wait until next week? And so the doctor may spend 20 or 30 minutes looking through a stack of papers for a couple of test results.”

There isn’t a universal format for EMRs, either, which means the physician can’t even depend on basic elements like dates being in the same place on a page. “It’s a difficult situation when trying to make a decision right there at the point of care. It gets in the way almost every day,” he says.

There are three key steps to helping surface the right information in these situations, Bess says:

  1. Obtain the data electronically
  2. Identify the patient correctly
  3. Normalize test results and information

“Right now, the test results are coming from different labs and will be culled and coded differently,” says Bess. With the steps above, the doctor can get a better look and trend the data needed for the patient.

The future of data transparency

Legislators have made moves to open up data access to the right organizations, Bess says. But the industry needs to work together, particularly on the patient identification piece, to truly surface data between various sources.

Labs and other healthcare organizations are also having conversations about normalizing test results. “Lab results are the type of information physicians make decisions with 80% of the time,” says Bess. “It’s a critical piece of information that’s not readily available.” Patients often don’t understand their test results, so doctors can’t necessarily rely on them for on-the-spot details.

What else has to change to make progress on normalizing patient data and taking information sharing and transparency to the next level?

“There has to be some reason for this to happen, and most of the time that means some type of financial or other benefit,” says Bess. “Either a state or potentially a private organization would benefit from aggregating, normalizing, and identifying these patients.”

Giving organizations tangible motivation would help push a sea change with how data is gathered, he says.

“And of course the patient is the ultimate guardian of that information, so the patient should have a say-so—and possibly even a financial benefit beyond the treatment,” Bess says. “As long as there is some kind of system where the right party has the right benefit, where it takes into consideration the work, capabilities, and benefits each individual party can derive from it, that’s what will end up pushing this.”

Patients can also help bring about the change. They can demand access to their information in a digital, discrete format that they can manage, control, and share however they want.

“Hospitals obviously will be pushed by this, and doctors live and breathe by their patients, so all provider organizations can certainly be leveraged by the patient asking for their information,” says Bess. “It’s the patient’s power and the patient’s involvement that will be the most likely thing that makes this happen.”

Matt Phillion is a freelance writer covering healthcare, cybersecurity, and more. He can be reached at