Aspiring to Awesome- Patient Preference Privacy Selections in EMR
| Status: | Completed |
|---|---|
| Conditions: | Infectious Disease |
| Therapuetic Areas: | Immunology / Infectious Diseases |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 1/21/2018 |
| Start Date: | August 2013 |
| End Date: | March 2014 |
Health information technology, including health information exchange, offers the potential to
improve care by providing an integrated view of relevant, integrated patient information from
multiple health care providers practicing in multiple sites. However, realizing that
potential can be difficult, particularly with respect sensitive information. Increasingly,
patients, patient advocate groups, and even the National Coordinator for Health Information
Technology are pushing for patients to have more granular control over specifically who can
see what personal health information in their electronic health records.
This will be a demonstration project aimed at showing the initial feasibility a system
allowing patient controls on their electronic health records. Because of the exploratory
nature of the research, the investigators do not have specific hypotheses. The investigators
hope that this demonstration and feasibility project will lead to more extensive prospective
evaluations of patient control of access to their health records and other tools for
enhancing patient control over access to their health records.
improve care by providing an integrated view of relevant, integrated patient information from
multiple health care providers practicing in multiple sites. However, realizing that
potential can be difficult, particularly with respect sensitive information. Increasingly,
patients, patient advocate groups, and even the National Coordinator for Health Information
Technology are pushing for patients to have more granular control over specifically who can
see what personal health information in their electronic health records.
This will be a demonstration project aimed at showing the initial feasibility a system
allowing patient controls on their electronic health records. Because of the exploratory
nature of the research, the investigators do not have specific hypotheses. The investigators
hope that this demonstration and feasibility project will lead to more extensive prospective
evaluations of patient control of access to their health records and other tools for
enhancing patient control over access to their health records.
In 2010, ONC launched a Challenge Grant program that called for proposals for "enabling
enhanced query for patient care." Under this program, the Regenstrief Institute and Indiana
University developed a Web-based program for patients' to express their preferences for who
can access data in their electronic health records (EHR). It then applied these preferences
by modifying an existing EHR viewer called Careweb® that is used by the Indiana Network for
Patient Care and Eskenazi Health, an urban public health system in Indianapolis.
This study:
1. Produced a bioethical report on "points to consider" to inform electronic health record
designers concerning giving patients granular control over access to their health data.
2. Interviewed patients to assess their desires for granular level of control over which
personal health information should be shared, with whom, and for what purpose, and
whether those preferences vary depending on the sensitivity of patients' health
information.
3. Developed a Web-based patient-centered user interface that allows them to choose whether
to provide or restrict access to their health information, focusing on who (health care
providers and non-providers), what information (all, none, sensitive information only),
and when (periods of time in their lives during which they desire restricting access to
their health information) .
4. Reprogrammed the user interface of Careweb®, a data viewing system used by clinicians in
Eskenazi Health, the third largest safety net health system in the U.S., and the Indiana
Network for Patient Care, the oldest, largest, and most comprehensive health information
exchange in the country. The reprogrammed viewer interface allows patients' preferences
to control who sees what information in a patient's electronic health record.
5. Performed a demonstration study among 32 health care providers (9 physicians and 23
clinical staff) and 105 patients in an inner city primary care practice where patients
recorded their preferences concerning who could access what information in their
electronic health records, and then implemented those preferences during a 6-month
real-world study in Eskenazi Health.
enhanced query for patient care." Under this program, the Regenstrief Institute and Indiana
University developed a Web-based program for patients' to express their preferences for who
can access data in their electronic health records (EHR). It then applied these preferences
by modifying an existing EHR viewer called Careweb® that is used by the Indiana Network for
Patient Care and Eskenazi Health, an urban public health system in Indianapolis.
This study:
1. Produced a bioethical report on "points to consider" to inform electronic health record
designers concerning giving patients granular control over access to their health data.
2. Interviewed patients to assess their desires for granular level of control over which
personal health information should be shared, with whom, and for what purpose, and
whether those preferences vary depending on the sensitivity of patients' health
information.
3. Developed a Web-based patient-centered user interface that allows them to choose whether
to provide or restrict access to their health information, focusing on who (health care
providers and non-providers), what information (all, none, sensitive information only),
and when (periods of time in their lives during which they desire restricting access to
their health information) .
4. Reprogrammed the user interface of Careweb®, a data viewing system used by clinicians in
Eskenazi Health, the third largest safety net health system in the U.S., and the Indiana
Network for Patient Care, the oldest, largest, and most comprehensive health information
exchange in the country. The reprogrammed viewer interface allows patients' preferences
to control who sees what information in a patient's electronic health record.
5. Performed a demonstration study among 32 health care providers (9 physicians and 23
clinical staff) and 105 patients in an inner city primary care practice where patients
recorded their preferences concerning who could access what information in their
electronic health records, and then implemented those preferences during a 6-month
real-world study in Eskenazi Health.
Inclusion Criteria:
For Patients:
- all adults 18 years or older who were fluent in English and had visited the study
primary care clinic at least twice in the previous year
For Providers:
- all personnel of all types practicing in General Medicine Clinic, both Firms A and B,
on the 4th floor of Wishard's Primary Care Center. For those physicians who agree to
participate, attempted to recruit 10 patients who had visited their primary care
physician at least twice in the previous 1 year.
Exclusion Criteria:
- will be lack of English fluency and inability to communicate due to physiologic or
cognitive difficulties.
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