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The consumer's viewpoint

July 1, 2006
by BRENDA WALTERS BERGESON, MD
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A survey examines what consumers are looking for in EHRs and PHRs

In his 2004 State of the Union, President Bush called for a transformation of the healthcare system that would include electronic health records (EHRs) for most Americans by 2014. Currently less than half of healthcare providers have implemented an electronic record-keeping system.

Behavioral healthcare providers lag behind medical providers in converting to EHR systems. This may be a reflection of the large number of small and independent practices in behavioral health, but the majority of providers are making plans to take advantage of EHR technology. A trend toward computerization clearly is developing.

Provider concerns regarding EHRs have been well described, ranging from transition time and costs to what would happen during server shutdowns and failures. Yet EHRs' advantages appear to be great, including their time- saving functions, long-term cost savings, ability to share information among providers, centralization of information (such as test results), use of disease-specific protocols, e-prescribing functionality, and inclusion of expanded medication information. Most agree that when implemented carefully, EHRs can benefit not only providers, but consumers, as well.

Consumers' Perspective

The Depression and Bipolar Support Alliance (DBSA), a patient-led, illness-specific organization, recently polled consumers and families regarding their impressions of a transformed healthcare system based on EHRs. A Web-based survey focusing on EHRs was posted on our Web site (http://www.dbsalliance.org) during February and March 2006. It also was sent via our e-news and announced to DBSA chapters and support groups. No incentives were offered to respondents, and personal identifying data were not collected. A total of 1,160 respondents (75% consumers/25% family members) completed the survey.

We found that consumers and families generally have a positive attitude toward EHRs. They see EHRs as an opportunity for a provider and consumer to track illnesses, medications, and test results, resulting in improved treatment and quality of care. One respondent said:

I think that electronic medical records have some very positive things about them: I would have better access to them, be able to discuss my situation with my doctors more effectively, it would create a better picture of my existence as a human being—my whole body instead of just bits and pieces to several different doctors—it would help doctors interact with each other—therefore getting me more effective treatment, and more.

EHRs can help avoid redundant information gathering. This would benefit consumers because 69% of respondents reported that they had to repeat their medical history at nearly every visit. Therefore, EHRs should reduce consumers' need to review history in detail, decrease consumer frustration, and save precious appointment time for current problems and concerns. Centralized, complete, and correct information also should be of great benefit to consumers during visits to new providers.

Survey respondents expressed interest in being able to access their records and correct them if needed. Eighty-two percent of consumers expressed the desire to be able to enter information in their EHR, and 31% would like a designated family member or friend to be able to view and enter data in their records. Under HIPAA regulations, consumers should have access to their EHRs.

Consumers and families have many concerns regarding their records, whether paper or electronic. Of utmost importance are privacy and security. One respondent said, “I have mixed feelings. I think that [EHRs] could really help with my treatment, but I worry about access—too easy for the wrong person, too hard for the right person?” They are worried that their records will not be secure; that they will be able to be changed easily; and that copies will be made and/or information lost. These are valid concerns that need to be addressed. After all, consumers will share more information with providers when they are confident that their information is confidential and when they understand the process for record sharing.

Personal Health Records

To help ensure that consumers understand their diagnosis and adhere to treatment, some people have proposed/created personal health records (PHRs). PHRs' structure varies in different settings. We believe that the most useful and effective PHR is owned and managed by the patient, who determines access to information. Some providers and/or health insurers are offering electronic, Web-based PHRs, and a nationwide PHR is envisioned to be universally available.

Consumers build a PHR over time and can review and correct it when necessary. A PHR functions primarily to assist the consumer in making treatment decisions. Information in the PHR can come from both providers and consumers. Some consumers even have suggested that their entire EHR should be contained within their PHR. It's important to note, however, that the PHR would not replace providers' records, but rather supplement them.

DBSA asked constituents about their views of PHRs in another part of the survey. In terms of content, diagnoses and medication history were listed as the most important components, and they would like their PHR to contain expanded information about their medication and diagnoses. Consumers believe that medications being taken, medication side effects, and medical test results are important components of a PHR.

Advanced directive information also was mentioned as a key element of a PHR by survey respondents. One consumer wrote:

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