Results Summary
What was the research about?
Researchers often combine patient health data from different sources, such as claims and health records. These data contain personal information, such as names and social security numbers.
In this study, the research team wanted to learn patients’ views on sharing and combining health data for research. The team surveyed patients about their views on
- Sharing health and personal data, such as social security numbers
- Benefits and risks of data sharing
- Ways to help patients feel comfortable sharing health data
What were the results?
Of patients who responded to the survey
- Only 26 percent felt comfortable sharing health data that included social security numbers. Patients were more comfortable sharing health data that didn’t include personal information.
- 87 percent were worried that hackers would steal their data; 73 percent were worried that employers may gain access to patients’ health data.
- 67 percent were concerned about ways of storing health data; 58 percent said researchers need to be more careful when handling data from children than from adults.
Patients said the most important benefits of sharing data were to help doctors make the best decisions about their health and make new treatments available quickly.
Patients felt more comfortable sharing data if they knew that the study would help others with similar health problems.
Who was in the study?
The study included 3,516 patients who were members of PatientsLikeMe, an online community. Of these, 86 percent were white, 4 percent were African American, and 4 percent reported mixed race. Also, 42 percent were ages 40–55 and 74 percent were women.
What did the research team do?
To create the survey, the research team held individual and group interviews with patients. The team also talked with clinicians and researchers. The team then sent the survey to members of PatientsLikeMe by email.
What were the limits of the study?
The study included members of only one online community. Most were white and had a high school degree. Views on data sharing may differ for patients from other backgrounds.
Future research could include a more diverse group of patients to learn their views about data sharing.
How can people use the results?
Researchers can use these results when considering ways to address patients’ concerns about sharing and combining health data for research purposes.
Professional Abstract
Objective
To understand patient perspectives on the risks and benefits of sharing and linking health data for research
Study Design
| Design Elements | Description |
|---|---|
| Design | Empirical analysis |
| Population | Questionnaire responses from 3,516 patients who were members of PatientsLikeMe in 2015 and 2016 |
| Interventions/ Comparators |
|
| Analytic Approach | Descriptive statistical analysis |
| Percentage of respondents who agreed with specific statements regarding data sharing under different conditions; mean scores from Likert scale |
Because health data contain sensitive health and personal information, linking records for research from multiple sources, such as claims and electronic health records, raises patient privacy concerns. Creating a patient‐centered assessment of the benefits and risks of data sharing and linkage is important to improve strategies for protecting patient privacy. This study analyzed patient questionnaire responses to understand patient perspectives about data sharing and linkage.
To develop the questionnaire, the research team held discussions with clinicians and researchers and sought input through message board conversations, in-person interviews, and focus groups with members of PatientsLikeMe (PLM), an online patient community. The team then piloted the questionnaire with PLM members who had been active in the community during the previous 90 days. The final questionnaire had six modules, including comfort levels with sharing and use of electronic health record data, changes in comfort level with removal of specific identifiers, perceived benefits of data sharing and linkage, perceived risks of data sharing and linkage, strategies to improve comfort with data sharing, and data sharing behaviors and beliefs.
The study included 3,516 patients from the PLM online community who responded to the questionnaire. Of these, 86% were white, 4% were African American, and 4% reported mixed race. In addition, 42% of patients were ages 40–55 and 74% were female.
Results
- Only 26% of respondents felt comfortable sharing health data when unique identifiers such as social security numbers were used to link records. Respondents were more comfortable sharing data when unique identifiers (90%), insurance identification numbers (82%), and names (77%) were not used to link records.
- Respondents rated the most important benefits of data sharing and linkage as helping their doctors make better decisions about their health and helping make new therapies available faster. The most important perceived risks were data theft by hackers (87%) and health data being reidentified and disclosed to employers (73%).
- Regarding questions about data sharing behaviors and beliefs, respondents expressed concerns about current means of electronic health data storage and protection (67%) and agreed that greater precautions should be taken when sharing health data from children than when sharing data from adults (58%).
Respondents reported feeling more comfortable sharing data if they knew that the study would help other patients with similar health problems.
Limitations
The study included patients from a voluntary online community. The study sample was primarily white and educated and not representative of the general population. Views on data sharing may differ for patients from other backgrounds.
Conclusions and Relevance
Patients in this study recognized the benefits of sharing and linking health data for research but were concerned about the security of sensitive personal and health information. Removing unique identifiers and communicating how the study can benefit other patients with similar health conditions were ways to increase patient comfort levels with data sharing and linkage.
Future Research Needs
Future research could recruit a more diverse patient sample to examine whether race or education influence patient perspectives about data sharing and linkage. In addition, future research could focus on identifying optimal ways of informing patients of risks and benefits related to data sharing and linkage during the informed consent process.
Final Research Report
View this project's final research report.
Journal Citations
Related Journal Citations
Peer-Review Summary
Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.
The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments.
Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:
- The reviewers commented that the study focused on differences in continuous outcomes rather than also including ordinal or binary outcomes, for example. They asked whether the study conclusions about linkage rules depended on the type of outcome and type of effect measure used. The researchers said that although their simulation example focused on a normally distributed continuous outcome, their results should hold for other types of outcome measures, as long as the sample size is large enough and the outcome variables satisfy other assumptions.
- The reviewers commended the inclusion of a practice guide as an appendix, saying that the guide helps make the statistical concepts in the report more accessible. However, the reviewers suggested that the guide note that studies analyzing heterogeneity of treatment effects benefit from greater statistical power and precision. The researchers added a sentence to the practice guide making this point.
- The reviewers were curious about the specific computational approaches used in the study, stating that this would be useful information to provide since linking records is a computationally intensive process. The researchers explained that they did not systematically collect information on computational methods used and run times for different models. However, the researchers said they are collecting such information currently and plan to incorporate it into a future revision of their practice guide.
Conflict of Interest Disclosures
Project Information
Key Dates
Study Registration Information
^Soko Setoguchi, MD, DrPH was the original principal investigator for this project.