We surveyed over 1,200 patients about their attitudes towards health information sharing.
While the benefits of broader data sharing are well understood in the industry, the perspective of patients is rarely captured.
Download the full report.
We surveyed over 1,200 patients on their perspectives on health data sharing in the U.S.
- Understand patients' concerns with medical record access.
- Discover the patient perspective on emerging use-cases for data.
- Learn why patients value access to their medical records.
*By completing and submitting the form, you will be added to our mailing list.
Patients are concerned about the security of their health data.
Data breaches are top of mind.
In 2023, there have been a number of high-profile medical data breaches that have exposed the personal health information of millions of patients.
of patients reported varying levels of concern about a potential data breach or leak of medical records.
- 28% are extremely concerned.
- 42% are moderately concerned.
- 25% are slightly concerned.
- Only 5% reported no concern at all.
of patients are worried about the security program of the vendors that store their health data.
Patients don't trust Big Tech with their health data.
What best describes your view of Big Tech companies like Amazon, Apple, Google, Facebook, and Microsoft offering products or services to store your health data?
The government is planning to certify certain networks that exchange data to protect consumers.
A majority of patients (61%) feel more confident in health data exchange that is facilitated by government-approved entities.
The federal government plays a significant role in health data exchange by establishing policies, regulations, and initiatives that promote interoperability and the secure exchange of health information. One key legislation in this domain is the 21st Century Cures Act, which was signed into law in December 2016. The act includes provisions aimed at accelerating medical product development, improving access to healthcare, and advancing health information technology.
The 21st Century Cures Act focuses on several aspects related to health data exchange:
1. Interoperability and Information Blocking
The federal government plays a significant role in health data exchange by establishing policies, regulations, and initiatives that promote interoperability and the secure exchange of health information. One key legislation in this domain is the 21st Century Cures Act, which was signed into law in December 2016. The act includes provisions aimed at accelerating medical product development, improving access to healthcare, and advancing health information technology.
2. Trusted Exchange Framework and Common Agreement (TEFCA)
The 21st Century Cures Act directs the Office of the National Coordinator for Health Information Technology (ONC) to develop a Trusted Exchange Framework and Common Agreement. TEFCA sets the groundwork for nationwide health information exchange by defining common technical standards, policies, and procedures for secure and interoperable data sharing. It aims to establish a unified health information network that connects different health information networks across the country.
3. Qualified Health Information Networks (QHINs)
The act envisions the establishment of Qualified Health Information Networks, or QHINs, which are entities that meet certain criteria and are authorized to facilitate the exchange of health information at a national level. QHINs act as intermediaries between health information networks and provide the infrastructure and services necessary for secure data exchange. Their goal is to enable seamless and efficient sharing of health information across various healthcare organizations, regardless of their health IT systems or geographic locations.
Patients are nervous about use-cases beyond treatment.
For what purposes are patients comfortable sharing their health data?
Treatment
Health information can be exchanged for the purpose of providing medical treatment to an individual. This includes sharing relevant health records, test results, medication history, and other necessary information among healthcare providers involved in the patient's care. The primary goal is to support coordinated and effective healthcare delivery.
Payment
Payment refers to the authorized use and disclosure of individuals' health information for activities related to billing, claims processing, reimbursement, and other financial transactions associated with healthcare services. It involves the sharing of relevant health data between healthcare providers, insurance companies, and other entities involved in the payment process.
Operations
Health information exchange may involve sharing data for administrative and operational purposes within healthcare organizations. This includes activities such as quality improvement, case management, billing, and internal audits. The exchange of information for operational purposes helps healthcare organizations function efficiently and provide high-quality care.
Public health
Health information exchange plays a crucial role in public health initiatives. It allows for the collection, analysis, and sharing of health data to monitor and respond to public health issues and outbreaks. This includes disease surveillance, epidemiological studies, and monitoring population health trends. Sharing health information for public health purposes helps identify and address health risks, track disease patterns, and facilitate timely interventions.
There is a significant degree of concern regarding the sharing of medical information without explicit consent, even with providers and payers involved in their care. While most feel that their health data is safe and secure, there are significant concerns regarding the possibility of future data breaches, with general agreement that government certification of health data exchange raises the level of confidence in data exchange.
Patients have mixed feelings about researchers using their de-identified data for research purposes.
64% of patients reported being comfortable with their de-identified medical records — removed of personal identifiers, such as name, address, and date of birth — being used for research purposes. Only 13% reported being extremely uncomfortable about it.
comfortable
comfortable
Patients care a lot about accessing their medical records.
A majority of patients say that it is very important for them to have access to their own medical records.
It is very important that I have access to my own medical records.
It is somewhat important that I have access to my own medical records.
It’s not that important that I have access to my own medical records.
It’s not at all important that I have access to my own medical records.
It is very important that I have access to my own medical records.
It is somewhat important that I have access to my own medical records.
It’s not that important that I have access to my own medical records.
It’s not at all important that I have access to my own medical records.
It is very important that I have access to my own medical records.
It is somewhat important that I have access to my own medical records.
It’s not that important that I have access to my own medical records.
It’s not at all important that I have access to my own medical records.
It is very important that I have access to my own medical records.
It is somewhat important that I have access to my own medical records.
It’s not that important that I have access to my own medical records.
It’s not at all important that I have access to my own medical records.
It is very important that I have access to my own medical records.
It is somewhat important that I have access to my own medical records.
It’s not that important that I have access to my own medical records.
It’s not at all important that I have access to my own medical records.
Individual Access Services (IAS) refers to the mechanisms and processes that enable individuals to access and manage their own health information. Health data exchange involves the sharing of electronic health records (EHRs) and other health-related information among healthcare providers, organizations, and IT systems.
IAS aim to empower patients and give them control over their health information. These services typically include:
1. Patient Portals
Web-based applications that allow individuals to securely access their own health records, lab results, medication lists, and other relevant health information.
2. Personal Health Records (PHRs)
PHRs are digital repositories of an individual's health information that are maintained and managed by the individual themselves.
3. Data Request and Authorization
IAS facilitate the process for patients to request their health records from healthcare providers or health information exchange organizations.
4. Data Privacy and Security
IAS prioritize the protection of individuals' health information by implementing robust privacy and security measures.
Patients are highly engaged — most respondents (83%) accessed their records in the past 12 months.
Nearly half (48%) have accessed their own medical records in the past 3 months.
83
%
Less conversation among the QHINs about the individual access use case than I would have liked — lots of talk about expanding to public health, payment, and operations. Critical to bring value to patients in ways they can directly see and feel — not just as ultimate beneficiaries.
I'm not endorsing any product or company, and obviously deeds are more important than words...
...but this is a great discussion of the intersection of privacy and consumer access to health data...
...and powerful yet practical approaches for technology to empower people.
Got a chance to chat with Apple about privacy and our health data! Check it out here: https://youtu.be/ek2WkOT9pQg
If you are not a covered entity and are not a business associate, you require patient consent to access data OR the data must be de-identified.
Period. That's it. Any other route and you're charting a course that's full of HIPAA violation risk.
Top reasons why patients access their own medical records
73%
50%
43%
How do patients feel after reviewing their medical records?
61
%
20
%
25
%
24
%
Download the full report.
We surveyed over 1,200 patients on their perspectives on health data sharing in the U.S.
- Understand patients' concerns with medical record access.
- Discover the patient perspective on emerging use-cases for data.
- Learn why patients value access to their medical records.
*By completing and submitting the form, you will be added to our mailing list.
