Personal Health Record and Challenges

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Early Experiences with Personal Health Records

Challenges in PHR

John Hamalka and his group write about their experience with three case studies—MyChart at Palo Alto Medical Foundation, PatientSite at Beth Israel Deaconess Medical Center, and Indivo at Children’s Hospital Boston.They present the challenges they faced in implementation of Personal health record from 1998-2007 and the challenges that they foresee in 2008 and beyond.

As consumer awareness in Personal Health record increases.There are bound to be some challenges in deployment of personal health record.

Abstract of the paper:

Over the past year, several payers, employers, and commercial vendors have announced personal health record projects. Few of these are widely deployed and few are fully integrated into ambulatory or hospital-based electronic record systems. The earliest adopters of personal health records have many lessons learned that can inform these new initiatives. We present three case studies—MyChart at Palo Alto Medical Foundation, PatientSite at Beth Israel Deaconess Medical Center, and Indivo at Children’s Hospital Boston. We describe our implementation challenges from 1999 to 2007 and postulate the evolving challenges we will face over the next five years.

Introduction

The definition of Personal Health Records (PHRs) is still evolving. Implementations to date have ranged from web pages for patients to enter their own data manually, to physician-hosted patient portals giving patients access to their electronic health records (EHRs), to employer/payer portals which give patients access to claims data. The intent of all of these systems is clear—to give patients better access to their own healthcare data and enable them to be stewards of their own information.

Traditionally, clinical records have been sequestered in hospitals and provider’s offices. Although HIPAA mandates that patients can access their medical records, it does not specify the manner in which this access is given, so most patients must visit the medical records departments of caregivers to obtain paper copies of their charts. As more clinicians adopt EHRs and a nationwide health information network (NHIN) is implemented, more and more patients will demand access to records online. Such access raises many questions. What information should be shared? How should patients be authenticated? How should privacy be protected?

At the height of the “dot.com” era, health information websites became very popular and attracted significant venture-capital funding. Although the number of visits to healthcare information websites grew substantially in the early 2000s, public opinion surveys demonstrated that consumers were interested in receiving more than just health information from unknown sites; they were interested in receiving information that was endorsed by their own physicians and getting in touch with their own physician offices.

This led EHR developers (both commercial and institutional) to develop products linking clinician and patient, such as web-based patient interfaces to their information residing in the EHR. In this paper, the authors share their collective experiences from operating PHRs in their respective institutions: a university hospital, a community-based multi-specialty group practice, and a children’s hospital.

Conclusion

The increasing prevalence of personal health records over the next five years will create many policy and technical challenges for healthcare institutions, payers, and employers, However, it may also provide a great opportunity. Providing patient control of healthcare information exchange is appealing, since it solves many of the privacy and consent issues faced by organizations desiring to exchange data today. By placing the patient at the center of healthcare data exchange and empowering the patient to become the steward of their own data, protecting patient confidentiality becomes the personal responsibility of every participating patient. This may accelerate healthcare information exchange as it simplifies consent models among producers and consumers of healthcare data. Our experience to date at three institutions demonstrates that personal health records which share data among patients and providers can successfully be deployed, but require careful attention to policy around privacy, security, data stewardship, and personal control.

Journal of the American Medical Informatics Association
Volume 15, Issue 1, January-February 2008, Pages 1-7

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