Personal Health Data Sharing: Benefits & Risks

Researchers analyize massive personal health data-sets to transform biomedicine by fostering research, scientific knowledge, and innovation. Although this offers benefits to individual health and care, there are also risks involved in health data sharing.

Health Data Collection

Health Data Collection

Health Data Collection

Health Data Collection

The internet and new technologies are making it possible for all healthcare ecosystem stakeholders (especially patients, providers, and researchers) to collect, access, use, and share health data for improving the health and well-being of individuals and communities.

Increasingly, people are taking a more active role in connecting health and care with one another, and are sharing their personal health data to better inform decision making through the use of computers, mobile devices, websites, and apps. Researchers analyize massive personal health data-sets to transform biomedicine by fostering research, scientific knowledge, and innovation. Although this offers benefits to individual health and care, there are also risks involved in health data sharing.

Interoperability: Seamlessly Exchanging Electronic Health Information From Multiple Sources

Interoperability: Seamlessly Exchanging Electronic Health Information From Multiple Sources

Interoperability: Seamlessly Exchanging Electronic Health Information From Multiple Sources

Interoperability: Seamlessly Exchanging Electronic Health Information From Multiple Sources

Today, most Americans have their electronic health record, a digital version of a patient’s medical history. Exchanging electronic health records from different data sources of health systems is growing. This exchange creates an open and connected community that is best able to serve the right people, at the right time, and in the right place.

Along with this trend, in October of 2015, the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology has issued the Final Version of the Shared Nationwide Interoperability Roadmap to lay out a clear path for a seamless data system that is accessible when and where it matters most (1).

Shared Nationwide Interoperability Roadmap

(FIG.I) Personal Health Data: Shared Nationwide Interoperability Roadmap from the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology

(FIG.I) Personal Health Data: Shared Nationwide Interoperability Roadmap from the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology.

Moving forward, the Roadmap has highlighted the incorporation of health-related data created, recorded, or collected by or from individuals across the data system, and the availability of tools for individuals to manage their health and well-beings by using longitudinal health information both inside and outside the clinical care delivery system. The Roadmap is a living document and undergoing changes as technology and policy require.

Health Information Blocking

Health Information Blocking

Health Information Blocking

Health Information Blocking

Although the efficient, secure, and appropriate sharing of electronic health information is crucial to advance the health of individuals and communities, some providers or entities are engaging in health information blocking. According to a report to the Congress in April 2015, it is unclear how health information blocking occurs, primarily because health IT developers have prohibited their customers from reporting or even discussing the details of costs and restrictions for sharing health information (2). In addition, about 1 in 3 patients have reported experiencing gaps in information exchange when seeking care for a medical problem in 2014 (3).

Gaps in Information Exchange

(FIG.II) Personal Health Data: Proportion of individuals who experienced one or more gaps in health information among their providers or between themselves and their providers when seeking care for a medical problem, 2013

(FIG.II) Personal Health Data: Proportion of individuals who experienced one or more gaps in health information among their providers or between themselves and their providers when seeking care for a medical problem, 2013.

Taken together, all stakeholders need to continue to seek out ways to support electronic health information sharing and transform care.

Advancing Science by Sharing Personal Genomic and Health Data

Advancing Science by Sharing Personal Genomic and Health Data

Advancing Science by Sharing Personal Genomic and Health Data

Advancing Science by Sharing Personal Genomic and Health Data

It’s a new phenomenon for researchers to study biomedicine by using shared personal genomic and health data. There are several online platforms for researchers to use for making discoveries:

  • Open Humans (openhumans.org), a nonprofit program, lets individuals share their personal genomic and other biological data with scientists who are interested in using that data for discoveries.
  • Genes for Food (genesforgood.sph.umich.edu), a medical genetic research project at the University of Michigan, engages individuals to participate in health survey and genetic research through the Genes for Good Facebook App.
  • Personal Genomic Project (personalgenomes.org), a nonprofit organization, creates a freely available scientific resource that brings genomic, environmental and human trait data donated by volunteers to scientists for better understanding human genetics, biology and health.
  • The openSNP (opensnp.org), an open source data sharing website, allows individuals to upload and share their single nucleotide polymorphism genotype data obtained from direct-to-consumer genetic testing companies, 23andme, deCODEme, and FamilyTreeDNA, and helps scientists use that data to make discoveries.

Sharing Personal Stories and Experiences

Sharing Personal Stories and Experiences

Sharing Personal Stories and Experiences

Sharing Personal Stories and Experiences

It’s another phenomenon for individuals to learn from one another’s stories and experiences about how to manage health conditions and diseases. There are thousands of websites, apps, forums, and blogs for individuals to share their health experiences.

  • PatientsLikeMe (patientslikeme.com), an online patient social network, lets patients learn from others, share their experiences with others, and find patients like them.
  • Health Unlocked (healthunlocked.com), an online social network with over 600 communities, empowers individuals to manage their health by obtaining relevant health information, gaining peer support, and receiving trusted advice.
  • Health Insurance Portability and Accountability Act (HIPAA): protecting personal health information from the disclosure by providers and associated businesses.

Health Insurance Portability and Accountability Act (HIPAA)

Health Insurance Portability and Accountability Act (HIPAA)

Health Insurance Portability and Accountability Act (HIPAA)

Health Insurance Portability and Accountability Act (HIPAA)
(FIG.III) Personal Health Data: Health Insurance Portability and Accountability Act (HIPAA)

Most Americans believe that individually identifiable medical and other health information should be protected. Being enacted since 1996, the HIPAA gives people rights over their health information and sets rules and limits on how their health information is protected within the healthcare system.

According to the U.S. Department of Health and Human Services’ office for Civil Rights, there are more than 1,300 breaches of unsecured protected health information that affect 500 or more individuals since October 21st, 2009 (4). In one case, with the exposure to the internet of 6,800 electronic health record of patients, the New York-Presbyterian Hospital and the Columbia University have reached settlement agreements in a $4.8 million fine (5).

To help implementing the HIPAA, in April of 2015, the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology has released an updated guide to privacy and security of electronic health information (6). This guide is to help providers succeed to carry out their responsibilities in the privacy and security of electronic health information.

It’s worth pointing out that there is no liability for personal health data uploaded and shared by patients onto websites and apps, for example, fitness trackers. In addition, according to a report published on the ProPublic on November 17th, 2015, the HIPAA doesn’t cover patient privacy on home paternity tests (7).

Genetic Information Nondiscrimination Act (GINA): Prohibiting Use of Genetic Information in Employment and Health Insurance

Genetic Information Nondiscrimination Act (GINA): Prohibiting Use of Genetic Information in Employment and Health Insurance

Genetic Information Nondiscrimination Act (GINA): Prohibiting Use of Genetic Information in Employment and Health Insurance

Genetic Information Nondiscrimination Act (GINA): Prohibiting Use of Genetic Information in Employment and Health Insurance
(FIG.IV) Personal Health Data: GINA Logo

People have differences in their DNA that can increase or decrease the chance of getting a disease. Every person should care about potential misuses of genetic information. Being enacted since 2008, the GINA protects people from treating unfairly in employment and health insurance because of their sensitive genetic information that may affect their health (8).

In one case, it’s the first ‘devious defecator’ U.S. court decision under the GNA that the firm, Atlas Logistics Group Retail Services, had tested DNA from two of its employees to seek to identify a workplace wrongdoer, and had faced penalties of $2.25 million in damages for those two employees (9).

However, the GINA doesn’t address the criminal privacy concern of rules and limits on the accessibility of law enforcement to personal genomic data sharing databases, direct-to-consumer genetic testing companies, or other resources of personal genetic information. An example of how law enforcement has used a genomic data sharing database to conduct a criminal investigation comes from a case at the Idaho Falls Police Department. In this case, the Department has obtained an investigative lead through matching a murder’s DNA with others from the database of a direct-to-consumer genetic testing company, Ancestry, but it turns out false positive in the follow up investigation (10).

Balancing Benefits and Risks in Personal Health Data Sharing

Balancing Benefits and Risks in Personal Health Data Sharing

Balancing Benefits and Risks in Personal Health Data Sharing

Balancing Benefits and Risks in Personal Health Data Sharing

Sharing health data can lead to the loss of personal privacy, but the actual harm is hard to evaluate. According to an experiment on what happens to sensitive data if they are stolen, the Bitglass, a total data protection company, has found that stolen data have received over 1,000 clicks and have spread to 22 different countries in 5 different continents within 2 weeks (11). However, it remains unclear how leaked or stolen personal health data can be used to cause actual harms except a violation of privacy.

The more personal health data you share, the greater risk you take. The less personal health data you share, the smaller benefit you have. Everyone who participates in the process of sharing personal health data should be better informed of both how to improve the health and well-being and how to protect the privacy and security. With that, it’s a balance between maximizing benefits and minimizing risks when sharing your personal health data.

Image Credit

Credit: English Text curated by Jinnah Griffin

Wanqiu Hou is the Founder of Scientific HealthSense, a website based application in mining health data for a consumer service. He received his PhD from the Chinese Academy of Sciences. Dr. Hou has more than 10 years of experience in medical research, writing and communications.

Wanqiu Hou is the Founder of Scientific HealthSense, a website based application in mining health data for a consumer service. He received his PhD from the Chinese Academy of Sciences. Dr. Hou has more than 10 years of experience in medical research, writing and communications.

Wanqiu Hou is the Founder of Scientific HealthSense, a website based application in mining health data for a consumer service. He received his PhD from the Chinese Academy of Sciences. Dr. Hou has more than 10 years of experience in medical research, writing and communications.

Wanqiu Hou is the Founder of Scientific HealthSense, a website based application in mining health data for a consumer service. He received his PhD from the Chinese Academy of Sciences. Dr. Hou has more than 10 years of experience in medical research, writing and communications.


The Michelson Medical Research Foundation's Groundwork blog is brought to you thanks to the generous support of Dr. Gary K. Michelson and his wife, Alya Michelson.

The Michelson Medical Research Foundation's Groundwork blog is brought to you thanks to the generous support of Dr. Gary K. Michelson and his wife, Alya Michelson.

The Michelson Medical Research Foundation's Groundwork blog is brought to you thanks to the generous support of Dr. Gary K. Michelson and his wife, Alya Michelson.

The Michelson Medical Research Foundation's Groundwork blog is brought to you thanks to the generous support of Dr. Gary K. Michelson and his wife, Alya Michelson.