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Patients Holding Back Health Information Over Data Privacy Fears

A fully interoperable health system is becoming closer to reality. Barriers to health data sharing are being removed and the ONC and HHS’ Office for Civil Rights are stepping up their efforts to prevent information blocking by healthcare providers.

However, in order for information to be able to flow, it is essential that information is collected. If healthcare providers and other healthcare organizations only have access to partial medical histories, the usefulness of health data will be limited.

Unfortunately, many patients are reluctant to provide their full medical histories to their healthcare providers, and even when information is provided, many patients do not want that information shared with anyone other than their primary healthcare provider.

Privacy and security issues are a major concern, and the problem is growing. As healthcare data breaches continue to increase year on year, consumer confidence is decreasing. This has a direct impact on the willingness of patients to share their health data.

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Important Medical Information is Being Withheld by Patients

The extent to which patients are withholding information has recently been highlighted by a Black Book survey. Between September and December 2016, Black Book conducted a national poll on 12,090 adult consumers to assess patients’ confidence in healthIT and the extent to which they have been willing to share their health information.

The results of the survey clearly show that patients are extremely concerned about the privacy of their data and believe that sensitive health information is being shared without their knowledge. There are also serious concerns about healthcare organizations’ abilities to protect health information and ensure that it remains private.

For the Black Book survey, consumers were asked about the contact they had had with technology used by their physician, hospital, and other healthcare organizations over the past 12 months, including mobile apps, patient portals, and electronic health records.

57% of respondents who had experience of these health technologies said they were concerned about the privacy protections put in place and whether their data could be kept private.

87% of Patients Unwilling to Share their Full Medical Histories

Consumer confidence in privacy and security measures put in place by healthcare providers appears to be at an all time low. In the last quarter of 2016, Black Book reports that 87% of patients were unwilling to comprehensively share all of their health information with their providers. 89% of consumers who had visited a healthcare provider in 2016 said they had withheld some information during their visits.

While certain types of information are openly shared, healthcare patients are particularly concerned about sharing highly sensitive data. Many feel that those data are being shared without their knowledge.

90% of respondents said they were concerned about details of their pharmacy prescriptions being shared beyond their chosen provider and payer, and that information was being shared with the government, retailers, and employers. 81% were concerned that information about chronic conditions was being shared without their knowledge, and 99% were concerned about the sharing of mental health notes. 93% of respondents said they were concerned about their personal financial information being shared.

According to Black Book Managing Partner Doug Brown, “Incomplete medical histories and undisclosed conditions, treatment or medications raises obvious concerns on the reliability and usefulness of patient health data in application of risk based analytics, care plans, modeling, payment reforms, and population health programming.” In a statement issued about the findings of the survey he said, “This revelation should force cybersecurity solutions to the top of the technology priorities in 2017 to achieve tangible trust in big data dependability.”

Providers’ Expertise with Technology Inspires Trust

Providers can do more to improve patients’ confidence in technology by demonstrating that they know how to use it. Patients do not appear to have an issue with the technology itself. Only 5% of respondents said they mistrusted the technology. However, 69% of respondents said their current primary care physician did not display enough technology prowess for them to be able to trust that individual with all of their data. 84% of respondents said their level of trust in their provider was influenced by how that provider used technology.

Patients are also having trouble using technology. 96% of consumers said they had left physicians’ offices “with poorly communicated or miscommunicated instructions on patient portal use,” and 83% reported having difficulty using the portal at home. Only 40% of patients said they had tried to use the portal in their physician’s office.

The survey also revealed that patients believe the data they are collecting via personal wearable devices is important. 91% of consumers said their physician practice’s medical record system should store any health-related data they request. However, most physicians do not want access to so much information. 94% of physicians that responded to this section of the survey said much of the personally collected health information is redundant and would be unlikely to make a clinical difference. Furthermore, so much information is now being collected that they are becoming overwhelmed by data.

Author: Steve Alder is the editor-in-chief of HIPAA Journal. Steve is responsible for editorial policy regarding the topics covered on HIPAA Journal. He is a specialist on healthcare industry legal and regulatory affairs, and has several years of experience writing about HIPAA and other related legal topics. Steve has developed a deep understanding of regulatory issues surrounding the use of information technology in the healthcare industry and has written hundreds of articles on HIPAA-related topics.