In the Journals

Patients prefer control over clinically sensitive data in EHRs

New research indicate patients prefer to withhold clinically sensitive information in electronic health records from their health care providers, according to findings from a large demonstration project published in the Journal of General Internal Medicine.

While previous studies have assessed the willingness of patients to share EHR information with physicians, patients’ preferences for when they are able to decide the parameters of health care provider access has not been determined, according to the study background.

“It is critically important to consider patients’ privacy preferences about their health information,” Kelly Caine, PhD, assistant professor in Clemson University School of Computing, SC, said in a press release. “If we fail to design systems that meet patients’ needs and desires about the extent to which their health data are shared, patients will reject them or even refuse care.”

Patient preferences   

Caine and colleagues conducted a series of studies that assessed how patients and health care providers felt about patient control over the sharing of their EHR information. 

In one paper, the researchers interviewed patients presenting for care in a hospital-based primary care adult medicine practice in Indiana. They gave study participants the ability to control access to personal information stored in an EHR from physicians, nurses and other health care staff.

Of the 105 participants enrolled, 60 of them stated they would not restrict access to any information for any health care provider. However, 45 participants limited access for at least one health care provider and 36 participants restricted access to all personal information in the EHR, according to study results.

Thirty-four participants stated they would block all personal information from physicians, nurses and other health care staff. Moreover, 26 participants stated they would block access by all doctors and nurses and five of them stated they would deny access to all doctors, nurses and other health care staff.

When asked whether participants agreed with the following statement, “Preventing some providers from seeing parts of my EHR could affect my relationship with them,” approximately 49% agreed or strongly agreed with the statement.  

“More research is needed to identify patient goals and understanding of the implications when facing decisions of this sort, and to identify the impact of patient education regarding information contained in EHRs and their use in the clinical care setting,” the researchers wrote.

Patient-centered user interface 

In a thematic and quantitative analysis, Caine and colleagues gathered suggestions on the design of a user-friendly web-based interface using interviews from 30 participants with highly sensitive data stored in an EHR.

They derived six design suggestions from the interviews. Patients prefer to have easy access to their EHRs, an overview of current EHR sharing permissions, granular/hierarchical control over EHR access, access to EHR controls based on dates, contextual privacy controls and notification when EHRs are accessed, according to the researchers.

In a supplement to these two papers, David Blumenthal, MD, MPP, president of the Commonwealth Fund, and David Squires, MA, senior researcher of the Commonwealth Fund, wrote: “All of these considerations illustrate the long road ahead for patient-controlled health records — but the innovative project described in these articles is a useful step forward. What is needed next is to develop further the technology and processes for informing patients of their choices, carefully put these into practice, and then study the consequences. Continued research on how to inform patients, support their choices, and understand the consequences for their care is essential. And while caution cannot be thrown to the wind, our prejudice should be to give patients a chance to express their views, and then abide by those as best we can.”

For more information:

Blumenthal D. J Gen Intern Med. 2014;doi:10.1007/s11606-014-3071-y.

Caine K. J Gen Intern Med. 2014;doi:10.1007/s11606-014-3049-9.

Schwartz PH. J Gen Intern Med. 2014;doi:10.1007/s11606-014-3054-z.

Disclosure: See the studies for a full list of researchers’ financial disclosures.

New research indicate patients prefer to withhold clinically sensitive information in electronic health records from their health care providers, according to findings from a large demonstration project published in the Journal of General Internal Medicine.

While previous studies have assessed the willingness of patients to share EHR information with physicians, patients’ preferences for when they are able to decide the parameters of health care provider access has not been determined, according to the study background.

“It is critically important to consider patients’ privacy preferences about their health information,” Kelly Caine, PhD, assistant professor in Clemson University School of Computing, SC, said in a press release. “If we fail to design systems that meet patients’ needs and desires about the extent to which their health data are shared, patients will reject them or even refuse care.”

Patient preferences   

Caine and colleagues conducted a series of studies that assessed how patients and health care providers felt about patient control over the sharing of their EHR information. 

In one paper, the researchers interviewed patients presenting for care in a hospital-based primary care adult medicine practice in Indiana. They gave study participants the ability to control access to personal information stored in an EHR from physicians, nurses and other health care staff.

Of the 105 participants enrolled, 60 of them stated they would not restrict access to any information for any health care provider. However, 45 participants limited access for at least one health care provider and 36 participants restricted access to all personal information in the EHR, according to study results.

Thirty-four participants stated they would block all personal information from physicians, nurses and other health care staff. Moreover, 26 participants stated they would block access by all doctors and nurses and five of them stated they would deny access to all doctors, nurses and other health care staff.

When asked whether participants agreed with the following statement, “Preventing some providers from seeing parts of my EHR could affect my relationship with them,” approximately 49% agreed or strongly agreed with the statement.  

“More research is needed to identify patient goals and understanding of the implications when facing decisions of this sort, and to identify the impact of patient education regarding information contained in EHRs and their use in the clinical care setting,” the researchers wrote.

Patient-centered user interface 

In a thematic and quantitative analysis, Caine and colleagues gathered suggestions on the design of a user-friendly web-based interface using interviews from 30 participants with highly sensitive data stored in an EHR.

They derived six design suggestions from the interviews. Patients prefer to have easy access to their EHRs, an overview of current EHR sharing permissions, granular/hierarchical control over EHR access, access to EHR controls based on dates, contextual privacy controls and notification when EHRs are accessed, according to the researchers.

In a supplement to these two papers, David Blumenthal, MD, MPP, president of the Commonwealth Fund, and David Squires, MA, senior researcher of the Commonwealth Fund, wrote: “All of these considerations illustrate the long road ahead for patient-controlled health records — but the innovative project described in these articles is a useful step forward. What is needed next is to develop further the technology and processes for informing patients of their choices, carefully put these into practice, and then study the consequences. Continued research on how to inform patients, support their choices, and understand the consequences for their care is essential. And while caution cannot be thrown to the wind, our prejudice should be to give patients a chance to express their views, and then abide by those as best we can.”

For more information:

Blumenthal D. J Gen Intern Med. 2014;doi:10.1007/s11606-014-3071-y.

Caine K. J Gen Intern Med. 2014;doi:10.1007/s11606-014-3049-9.

Schwartz PH. J Gen Intern Med. 2014;doi:10.1007/s11606-014-3054-z.

Disclosure: See the studies for a full list of researchers’ financial disclosures.