Majority of patients repeatedly provide duplicate health information, Carta Healthcare survey finds

Matt Hollingsworth founded Carta Healthcare after he watched his mother carry a binder cataloging her five bouts with cancer between medical appointments. A new study from the company found that 83% of patients have had the same experience of repeating their health history.

The survey of over 1,000 patients found that almost three-quarters reported filling out a duplicate form and 42% spent six minutes or more recounting past medical history at every appointment due to a lack of integrated data. Hollingsworth, CEO at Carta Healthcare, said he designed the company with the goal of addressing the issue he thinks patients care the most about in relation to their data: interoperability.

“One thing that I think is completely unconscionable is that you can't share your data with other care providers when you want to get better care, and people get frustrated about that constantly,” Hollingsworth told Fierce Healthcare.

When asked about patients’ top concerns regarding their experience at healthcare visits, 53% of respondents said time spent waiting was their primary concern while 48% said cost or lack of data regarding outcomes for their condition.

Over a third of respondents expressed frustration that their doctor was unable to provide them with outcomes of their condition based on other patients’ results. Hollingsworth said this gap in information is a matter of poor health data integration.

While it is currently possible to integrate and aggregate de-identified clinical data, lack of adoption results in patients feeling that important information is being kept from them. Of the respondents, 64% said their doctor being honest about their condition and what factors are and are not in their control in regard to their health would increase their chances of recommending their doctor to others.

What patients don’t see, Hollingsworth said, is the mountain of labor done between appointments, largely by clinicians like nurses, inputting patient data. With staffing shortages and burnout rampant, Carta works to fill the gap by providing software that eases data input and integration tedium.

“The way that you get comparable data sets in the U.S. healthcare system is you have nurses go and fill forms out with a standard code set,” Hollingsworth said. “That's the only place in the U.S. healthcare system where translatable data is created. You have a nurse at one site and a nurse at another site that are filling out forms with the same exact definition so that they can be directly compared.”

What patients do see is the waiting room. About half of respondents said they spend the majority of their visit waiting for a doctor or a nurse. Only 20% said they spent most of their visit talking to a healthcare professional.

The vast majority, 80% of respondents, said healthcare providers spent over half their time looking at screens rather than at the patient in front of them during the visit.

Despite all this time spent trying to input patient data so they can be shared between providers and from appointment to appointment, Hollingsworth points to the mistakes that are made in electronic medical records. A 2012 CHIME study found that 20% of CHIME members could trade an adverse medical event to problems with patient identification or patient matching.

The Office of the National Coordinator for Health Information Technology (ONC) released a 2014 report revealing that seven out of 100 patient records are mismatched. What’s more frightening, the error rates jump to 10% to 20% within healthcare and 50% to 60% when entities exchange with one another.

“Everybody in my mom's cancer survivor community has had almost the same exact experience,” Hollingsworth said. “Mistakes kill people. There are examples of where some history was missed, and folks died. It is sad, and totally addressable. Hence the survey was to try to draw attention to this because it's ridiculous.”

In April 2021, a federal government regulation went into effect requiring health IT vendors, providers and health information exchanges to enable patients to access and download their medical records via third-party apps. 

As of March 2022, 300 complaints of healthcare organizations defying this regulation and blocking access to patient data have been logged. 

While patients also expressed concern about the security of their data and being compensated for the use of their data, Hollingsworth said in his experience the concern brought up around the dinner table is health. “I'd be willing to bet that a majority of the people are practically most concerned about how the use of their data could help them improve their health,” Hollingsworth said.