One topic that has drawn my interest repeatedly over the last few years is patient access to their own data — perhaps because getting my own health records from doctors’ offices has been like pulling teeth.
I have written a few times about the “GetMyHealthData” initiative, launched with the idea that a concerted effort to enlist people to ask for their health data would unlock consumer demand. In 2016, Christine Bechtel reported on the first year of that effort at the Health Datapalooza in Washington, D.C. “We thought if we pulled on the rope, it would unravel the knots in the system,” she said. They asked people to fire the first round of “tracers” and report back on what happened to them. “What we found was that when we pulled, there was an elephant sitting on the other end of the rope,” she said. People got messages that they could have their data if they asked correctly or letters asking why they wanted it. Not a single healthcare organization was able to send data to a health app at a patient’s request. People reported getting PDF files on CD-ROMs. “We saw them being charged high fees that stood in the way of data access,” Bechtel said. Some were charged up to $600, with no estimate upfront about how much it would cost. Some providers were even charging for access to patient portals that were subsidized by taxpayer dollars through the Meaningful Use program.
So I was intrigued this week when I saw a Tweet from the folks at the Open Notes initiative pointing to a hospital ranking system on patient record request responsiveness created by a company called PatientBank. The San Francisco-based startup offers a service that helps patients gather, store and share their medical records. The basic service is free. The company makes money by offering add-on services such as having medical experts help people clean up and summarize the data.
Because PatientBank spends so much time helping patients request data, it decided to create a rubric to rate hospital health information management (HIM) departments on four simple categories:
• Speed: How long does the provider normally take to respond to requests for records, ranging from 1 (slow) to 5 (fast)? Under HIPAA, providers are given 30 days to respond to requests.
• Fees: How much does the provider charge patients for medical records, ranging from 1 (very expensive) to 5 (no fee)? Providers are allowed to charge a reasonable, cost-based fee.
• Fulfillment: How capable is the provider in returning medical records in the form and format (e-mail or electronic) patients ask for? The range is from 1 (very limited) to 5 (very flexible).
• Delivery: How does the provider allow patients to submit requests for records (e.g. by fax, email)? These policies are ranked from 1 (strict) to 5 (flexible). HIPAA does not permit providers to require patients to use only certain delivery methods.
PatientBank created performance scores of U.S. hospitals for its own internal purposes but is now making them public to give patients more information and to help hospitals improve. Where does your hospital rank?
I interviewed Paul Fletcher-Hill, the company’s co-founder and CEO, who said one goal is standardizing the experience of requesting records for patients. “Every hospital is a little different in terms of how they release records and what their policies are,” he said. “Our motivation is to be an educational tool for people who are requesting records, but we also certainly hope that hospitals will use this information to benchmark their own programs.”
There is very little transparency in this process, he added. A hospital will have its own policy but not have any idea what a hospital down the road is doing, let alone what the best in their state or in the country are doing. “We want to use the fact that we are a part of so many record requests across the country to learn from that experience and structure that data to say ‘this is what a good medical records department looks like,’” Fletcher-Hill said.
So how would he characterize hospital record request response performance generally? “It is all over the map,” Fletcher-Hill said. “We emphasize and try to learn from some of the best hospitals. Despite all the guidance from the Office for Civil Rights at the U.S. Department of Health & Human Services, PatientBank finds that many records departments are still unclear about some regulations on releasing medical records. For instance, some hospitals don’t charge patients for their records, while others do. “That is one of the big ambiguities with HIPAA — how much you can charge individuals for their records — and every hospital seems to have a different interpretation on what their responsibility is to patients and whether they should or should not charge,” Fletcher-Hill said.
One of the easiest and most important things hospitals can do, he said, is be flexible in accepting requests for records. “In the 21st century, it sounds sort of crazy that this is an innovation, but hospitals that allow people to submit their requests via a central e-mail address or fax instead of requiring them to send it in the mail — that speeds up the process a lot.”
I asked Fletcher-Hill if smaller, rural hospitals that have fewer resources didn’t rank as well as academic medical centers and large health systems.
He said PatientBank hasn't yet done much analysis on the results, but he noted that there does not seem to be a general correlation between a hospital being ranked as one of the best hospitals in the country and also being ranked high by PatientBank. “There are some hospitals that are smaller and have a dedicated staff working on record releases, and maybe don’t receive as many requests as a really big health center, that are the best at this,” he said. (The 270-bed Poudre Valley Hospital in Fort Collins, Colo., is currently ranked highest in PatientBank’s scoring.)
“We want to learn from those hospitals doing this really well and help the larger institutions learn from that, because that contributes to patient experience. We hear from patients who say, ‘this all happened electronically and it was incredible. I didn’t know this would be so easy.’ That experience is something more patients should be having when trying to request their medical records.”
The HHS Office for Civil Rights, the Office of the National Coordinator for Health IT and the American Health Information Management Association (AHIMA) are all working to improve responses to patient health information requests. Earlier this week, ONC published a research report recommending a streamlined and more transparent patient records request process to reduce the burden on consumers.
On July 20, AHIMA made public a suggested model patient access form intended to be used as a template—to be modified with organizational-specific contact information—and given to patients or their designated personal representative when they’ve requested access to their health records.
AHIMA said it developed the form after hearing from several healthcare and patient advocacy working groups that consumers are often confused by the inconsistency of patient access forms given to them by their healthcare providers.