Guest Editorial by David Wiljer, PhD & Sara Urowitz, PhD
As EHRs and EMRs have started to become more pervasive, and as reams of data are being generated, the focus on Meaningful Use of EHRs has been divided into primary and secondary uses of the data. Although there are several definitions emerging of primary and secondary use, primary use focuses most frequently on clinical documentation for purposes of providing direct patient care; secondary use focuses on all other aspects including research, administrative use, quality improvement, patient education and behavior change, population studies, etc. The need for different classifications of the data for privacy and security reasons is clear. However, this segregation of data by usage, and labeling of certain uses as primary and others as secondary, poses the risk of limiting the advancements we could be making by proper and appropriate access to high quality data generated at the point of care.
If we consider the use of data by patients, for example, the issues around the primary/secondary use dichotomy quickly emerge. The Office of the National Coordinators for Health Information Technology states that the benefits of Meaningful Use of EHRs and EMRs includes 1) complete and accurate information, 2) better access to information and 3) patient empowerment. The Office states on its website that, “Electronic health records will help empower patients to take a more active role in their health and in the health of their families. Patients can receive electronic copies of their medical records and share their health information securely over the Internet with their families.” This then appears to beg the question, “What constitutes Meaningful Use from a patient perspective?” Is simply providing patients with electronic copies of their medical records going to empower them? Is it going to make them more active in their healthcare?
What do patients really need to be truly empowered by the information in the EHR? Patients need to have quick, easy access to their information, they need to have a means of understanding that information in a way that works for them, and they need to act on the information in an appropriate manner and access services based on the information that they have. As Kevin Leonard, the author of Prescription for Patience and the founder of the Patient Destiny movement, says, “no one cares more about my health than me; my doctor may care deeply, but not more than me — I guarantee it.” Outside of large managed health systems and a few other notable exceptions, most clinicians and EHR/EMR vendors are not thinking about how to use the data they generate to empower patients and activate them in their care — at best, it is often an afterthought and, at worst, completely ignored.
Over the last decade that we have been studying patient access to personal health information, the issues have not changed substantially. Clinicians support the idea in general, but they often worry about how and why patients will access the information, will they be able to understand it, should they be accessing it on their own, will it generate unnecessary anxiety for patients – and will it make the healthcare system more inefficient. We have heard many excuses about why we shouldn’t provide patients with their information within the current system, but not enough conversation about how to change the way data is gathered, presented, and optimized in order to empower and activate patients in their care. Simply having EMRs is not sufficient to empower and activate a patient.
Several key themes have emerged in our research that would help us answer the question, “How do we make EHRs/EMRs more meaningful for patients to use?”
- Patients and families want access to all of their information as rapidly as possible, no matter who generates that information, and ideally it should all be in one location.
- Many patients would like assistance in interpreting the information, both online and face-to-face, but they would like to have the autonomy to decide when and where they access this information.
- Patients would like their information to be stored securely and confidentially, but they would like access to it and they would like it to be utilized appropriately. This requires finding the balance between security and easy of use.
- Providing patients with this data will only be useful and meaningful to them if they can use it to address a clinical, health, or wellness issue in a timely manner.
- Finally, education is essential. We need to focus on how patients can easily understand the information that is generated and, at the same time, we need to educate clinicians so that they can help empower and activate patients through EMR data. Making EMRs meaningful for patients to use will not be accomplished by hitting “send” or “fax,” but through innovative approaches to generating data and presenting it through EMRs.
It is time, then, to put aside dichotomies such as primary and secondary use and think carefully about how best to maximize on and optimize the use of the data that we are generating with each entry into an EMR to make the data meaningful for patients to use.
David Wiljer, PhD is Director, Knowledge Management and Innovation at University Health Network, Toronto
Sara Urowitz, MSW, PhD is Manager, Education Informatics and ELLICSR: Health, Wellness and Cancer Survivorship Centre and Assistant Professor, Department of Psychiatry and Institute for Health Policy, Management and Evaluation, University of Toronto
 The Office of the National Coordinators for Health Information Technology, http://healthit.hhs.gov/portal/server.pt?open=512&objID=2996&mode=2