According to a Pew Charitable Trust survey released in September, a majority of Americans want to make it easier for their different healthcare providers to share their medical information and would like improved access to it for themselves.

At the same time, they want the government to ensure the privacy of their data, and when it is shared, only the right data is provided to the right people.

In March, the Office of the National Coordinator for Health Information Technology (ONC) and Centers for Medicare & Medicaid Services released a federal rule to make it easier for patients to access their health data and improve sharing across care settings. Still, Pew noted that the federal rules don’t require images such as CT scans and X-rays to be available for download. Most survey respondents (87 percent) want to electronically access these types of images in their electronic health records.

The survey, conducted June 1, 2020, through July 3, 2020, questioned a nationally representative sample of households, with 1,213 responding by phone and 1,103 responding online.

Some 61 percent of adults said they would like to download their records on mobile devices to help them manage their health. A majority said they are comfortable using technologies such as smartphone applications to access their electronic health records.

But attitudes about the sharing of patient information were not uniform regarding the type of information patients want to be shared. For instance, most people wanted information about allergies (80 percent), immunizations (78 percent), and prescriptions (78 percent) shared between providers. However, they were less enthusiastic about other types of information such as billing and claims data (48 percent) or information about exposure to violence or a history of physical abuse, hunger, and homelessness (48 percent).

Ben Moscovitch, project director of health information technology for The Pew Charitable Trusts noted previous Pew-led focus groups revealed concerns about sharing data on social determinants because participants felt their health care provider could prejudge them.

Survey respondents did have some privacy concerns. Eighteen percent of respondents thought the privacy risk of having greater access to their own electronic health record data outweighed the benefits. Sixty-two percent said they would be extremely or very concerned about privacy if once they downloaded their records to a health app it might no longer be protect by federal laws relating to privacy. They were concerned their records might be subject to the apps’ privacy policy and terms of service.

One particular concern was how providers should best match different health records relating to the same patient. Today, healthcare providers rely on a patient’s name, address, and birth date to match records relating to the same patient across providers and facilities. If any of that information is incorrect, data about a patient might not be correctly matched. Nearly three-quarters of respondents (74 percent) said they would support the development of federal standards to match a patient’s electronic health records across providers more accurately. Only about two-thirds of respondents (67 percent) said the federal government should be allowed to spend money on developing such solutions. Respondents supported several means of doing that, such as the use of fingerprints, facial recognition, or eye scans, but they were most comfortable with the use of a unique code.

RARE-X understands the importance of patients having access to their electronic health records and the potential for improving the understanding of rare diseases and accelerating the development of new therapies when patients share that data. It is essential to ensure patients greater access to their own health information and provide it so that they can easily and securely share it with researchers.