Welcome to the Wonderful World of eHealth
MHA Issue Brief, 2009
EMR, EHR, PHR, HIE, RHIO. Mental health advocates are familiar with their fair share of strange acronyms, but many are not as familiar with this new set that has been showing up with increasing frequency in the health care literature (see sidebar for definitions). But eHealth has already started to have an impact on all health care consumers (which is all of us) and has the potential for both great harm and great good in relation to mental health care. This issue brief is designed to help Mental Health America affiliate staffs navigate their way through the world of electronic record sharing.
Briefly, an electronic medical record (EMR) is a computerized system for recording and storing information about an individual’s medical experiences. Therefore an EMR may contain information on all of the consumer’s appointments, providers, lab tests, medications, hospitalizations, immunizations and other health information. An EMR, by definition, will be available only to the consumer’s doctor, to others working in the same clinic, or to other providers who may be part of the same health care organization and are authorized to access the information. However, through health information exchange (HIE) this information can potentially be shared with other health care organizations.
Why Should You Be Tracking Developments in EMRs?
Consider this story.
Mary was employed full time working in the mental health field and covered by private insurance. She had a psychiatric illness that was stabilized. She had a history of angina. One day at work she started having chest pains and shortness of breath, which worsened during the day. She went to the emergency room with a friend At the ER they started an IV, did an EKG and asked her various health-related questions, including information about medications she was taking, which included medications for her psychiatric condition. After what seemed like a long time the friend checked with the nurse who said they were trying to call the doctor. After a further wait Mary learned that the doctor they were trying to reach was her psychiatrist because they wanted to find out if she might be having a panic attack. When they reached the psychiatrist he told them that given the EKG readings they should be talking with a cardiologist. At that point, and with the advocacy of her friend, Mary’s complaints were finally taken seriously and she was admitted for treatment of a heart attack. (adapted from a true story)
Virtually anyone who has worked with individuals who have serious and persistent mental illness have heard stories similar to this one where a valid medical complaint was discounted when a medical provider learned of the individual’s mental illness. While it is difficult to know just how widespread such lapses in care may be, a recent study suggests that the concern is not just anecdotal. A review of a number of studies of screening for physical conditions such as cholesterol, high blood pressure, diabetes and cardiovascular care found that people with mental illness compared to those without received poorer quality care when it came to recommending drug treatment, diagnostic and investigative procedures and surgical interventions. 1 Therefore, it is not surprising that mental health consumers are very concerned about efforts to make mental health information more easily accessible as part of an EMR.
However, even in Mary’s case the potential impact of an EMR is unclear. With immediate access to her health information, the ER doctor would have known about Mary’s psychiatric history whether or not she shared information about her medications and their purpose. However, he also would have had information about her history of angina, which may have made him less likely to discount the symptoms as due to heart problems rather than panic. So the jury is still very much out as to the benefits and risk of EMRs. The good news is that as the process of developing and implementing these systems continues, consumer and advocacy involvement can help shape this process to best serve the needs of the health care consumer.
Attitudes about Sharing Health Records
70% of respondents to attitude and opinion research say they favor secure ehealth information exchange2. The survey also found that the more people learned about health information exchange the more they support it. The factor that appeared to have the strongest impact was having access to information in medical emergency.
A separate survey done by the same organization found that 72% favor creation of nationwide health information exchange with the assumption that the consumer would control what information from their medical record is shared, except in emergencies when an authorized family member or representative could approve the sharing of information3.
However, the National Consumer Health Privacy Survey4 (2005) found that 67% of their respondents were somewhat or very concerned about privacy of their personal health information (not necessarily only electronic records) and 52% were concerned that insurance claims information might be used by an employer to limit their job opportunities (a 44% increase from 1999 survey). One of eight engaged in privacy protective behaviors (avoiding regular doctor visits, asking doctor to fudge a diagnosis, paying for a test because they didn’t want to submit a claim or avoiding a test altogether). 98% said they would willingly share information with their doctor and 60% with doctors not directly involved in their care to facilitate coordination.
Benefits and Limitations of Electronic Records
Benefits of EHRs
- EHRs could have a direct effect on provider and patient decisions at the point of care by providing necessary information about a patient’s health and care history in a timely fashion5.
- EHRs can ensure that critical medical information is available to emergency room providers anywhere in the country, if needed.
- EHRs are also touted for their potential to yield a generation of richer, less expensive, and more relevant clinical information that could capture health care quality at the practice, organizational, and regional level. This type of data could serve a number of different purposes, like helping providers and patients better understand variations in health care quality, compelling providers to improve, and allowing patients to choose high-performing health care practitioners and organizations6. Organizations such as the Veterans Health Administration and Kaiser Permanente already use EMRs to answer practical questions about safety, effectiveness and costs of new treatments much faster than the traditional process of randomized clinical trials.7
- EHRs can improve administrative efficiency by integrating medical records, appointments and billing systems.
- EHRs can improve patient safety in a variety of ways; e.g., eprescribing can reduce medication errors resulting from errors in reading prescriptions, complete medication records can reduce the likelihood of drug-drug interactions if all current medication information were not known.
- EHRs can improve patient care by providing online prompts to physicians, such as suggestions to screen for depression of other conditions when certain information is entered in the record (e.g, a post-partum visit).
- EHRs can also empower consumers by incorporating information that consumers want to communicate to physicians, such a preferred gender of providers, information about trauma history that might effect how they want to be examined, etc.
- EHRs can afford greater security because these systems track who accesses them and this can be used to audit whether these individuals were authorized or had a medical need to access the information.
Limitations of EHRs
- Electronic systems are very expensive.8
- Different electronic systems may or may not be able to work well with each other.
- There are no standard rules that ensure that people will be able to choose who can have access to their information and who cannot.
- Information is a valuable resource for many people, but there are no rules or guidelines to govern how electronic health information is used, once someone has access to it.
- State laws sometimes present barriers to sharing information across state lines.
- A paper record can only be accessed in one location, EHRs can potentially be accessed from many locations and the ability to share information once accessed electronically is enhanced. A stolen laptop could violate the security of thousands of records. Well publicized violations reduce trust in the system.
- While it is technologically feasible to set up HIE so that consumers can limit which information is shared, not all systems in use currently allow this.
- If consumers do not trust the security and privacy of these systems they may engage in privacy protective behavior which can lead to health risks.
HIE is generally based on broad consent that the consumer is asked to provide when initially seeking care. There is currently no comprehensive framework or set of rules governing consumer consent for such exchange of information. Federal laws governing privacy of health information are incorporated in the Health Insurance Portability and Accountability Act of 1996 (HIPAA). HIPAA provides for both civil and criminal penalties if privacy is violated:
- Civil--$100 per violation with a maximum of $25,000 for violation of an identical provision
- Criminal Penalties—fined between $50,000 and $250,000 and imprisoned between 1 and 10 years depending on circumstances and
However, enforcement is minimal; no civil monetary penalties have been assessed and there have been only three criminal prosecutions. Furthermore, HIPAA does not apply to personal health records that are placed on commercial sites such as Google Health and it is unclear whether HIPAA would apply to records that are shared through HIE9. HIPAA also does not prohibit employers or life insurers from requiring authorization to access health records as a condition of employment or insurance.10
The one area where there is significant consumer protection is with regard to confidentiality of alcohol and drug abuse patient records. Under federal law these records may not be disclosed without the prior written consent of the patient. Given the degree to which these disorders co-occur with mental illnesses, this fact creates some barriers to sharing of mental health records.
The State of the Art
For those concerned about the spread of EMR the good news is that despite a lot of time, effort and money, electronic recordkeeping is the exception and not the rule. According to the Robert Wood Johnson Foundation a survey of more than 2,500 physicians—the most up-to-date and comprehensive picture of EHR adoption trends—shows that only 4 percent have a fully functional EHR system and 13 percent have a basic one.11 To a large degree this has to do with the fact that 90% of outpatient visits are in small practices and only about 1 in 4 of these use EMR.12 Furthermore, RWJF found that there is no significant association between EHR use and quality of care. According to David Brailer, former national HIT coordinator, it takes about a decade after the substantial majority of the players are automated for full benefit to be gleaned.13
The state of the art is even bleaker with respect to HIE. Health Affairs reported on a survey that found nearly one-quarter of the 145 RHIOs were defunct. Only twenty initiatives were deemed to be of at least modest size and exchanging some clinical data.14 RHIO development has been slowed by lack of interoperability and concerns about HIPAA noted above. Most successful RHIOs started by focusing their efforts on exchanging test results from laboratories and imaging centers, Exchange of other data -- such as clinical notes -- is much more difficult to achieve, partly because cost savings from such initiatives are less tangible.
However, there are numerous efforts underway to continue to promote development of EMRs. For instance, the Centers for Medicare & Medicaid Services is implementing a five-year demonstration project that will encourage small to medium-sized primary care physician practices to use electronic health records to improve the quality of patient care. The demonstration is designed to show that widespread adoption and use of interoperable EHRs will reduce medical errors and improve the quality of care for an estimated 3.6 million consumers. Over a five-year period the project will provide financial incentives to as many as 1,200 physician practices that use certified EHRs to improve quality as measured by their performance on specific clinical quality measures15.
What Can You Do to Promote EMRs in Your State?
Because of the evolving state of EMRs and HIEs the time is ripe for consumer advocates to get involved. It is likely that some sort of demonstration is going on in your state. Your involvement can shape the degree to which consumers can retain control over their health care information. Things you can do include:
- Be familiar with your state and federal confidentiality laws and statutes governing the sharing of health records.
- Learn about HIT and what these systems can and cannot do. Don’t rely on what provider organizations tell you—the technology can often accommodate more consumer choice, but at a cost. Some providers may have purchased systems that cannot accommodate consumer choice and so oppose policy changes that might require expensive changes to their systems.
- Request to be involved in the policy development and implementation process of any HIE that is being developed in your state. If you can get involved, ask these questions:
- Can the system limit what information can be shared (segment mental health information from other information)?
- What control will consumers have over who sees their information?
- What access will consumers have to their own EMR? Can they download, make copies of records?
- What is being done to ensure the privacy and security of information? If a breach of information does occur, will the individual be told? What remedies will be offered?
- What are penalties in state statutes for inappropriate use (accessing information, sharing information inappropriately, impact on certification/licensure of provider)? Do these need to be updated?
- What sort of education is given to health care providers regarding privacy concerns and consent requirements? What sort of education will providers receive regarding the potential for discriminatory treatment if mental health information is available to them?
One State’s Story: Wisconsin
In 2006 Wisconsin mental health advocates were contacted by a State legislator who was working with a number of health care systems to revise state statutes to facilitate the sharing of health records. Wisconsin has informed consent requirements for sharing records from mental health treatment facilities that is much more restrictive than federal law. The health systems wanted to change Wisconsin law to mirror federal law.
Advocates strongly opposed these changes because of the concerns about discriminatory treatment (as exemplified by Mary’s Story). However, many advocates recognized the value of some increased sharing of information, especially as it related to medication information and facilitating sharing of information between mental health specialty providers and primary care providers. As a result a compromise was reached that would allow the sharing of limited mental health information—diagnoses, medications, treatment providers and dates of treatment, but not treatment plans, admission and discharge summaries or other narrative records—but only within related health care entities (e.g., a health maintenance organization or provider health system where the providers are already organizationally related). These changes became law in 2006.
A workgroup was organized the following year to explore more substantive changes to the state confidentiality statutes. The workgroup was fairly balanced between MH providers and advocates and health system employees (both administrative and medical records personnel). After considerable discussion it was agreed to allow the sharing of limited information from mental health treatment facilities (the information noted above plus lab and imaging results that may have been obtained while an individual was at a MH treatment facility) with other health care entities (not only “related” entities). As part of this “compromise” the State agreed to provide anti-stigma training to providers as part of their education on the new regulations. While health system staffs pushed hard for even broader information sharing, arguing that doctors should have any information available, it was the medical record staffs who were decisive in the final outcome, noting that there are not good standards for sharing of narrative information (“it would be a nightmare”, one stated). The fact that substance abuse information is significantly intermingled in many mental health records, heightened the concerns about how this narrative information could be shared without violating the federal laws protecting the confidentiality of these records. These changes became law in 2008.
Agency for Healthcare Research and Quality – National Resource Center on Health IT
Markle Foundation – Health Information Technology Projects
National Conference of State Legislatures – Health IT Program
Terminology – Glossary of Terms16
Electronic Health Record (EHR): An electronic record of health-related information on an individual that conforms to nationally recognized standards and that can be created, managed, and consulted by authorized clinicians and staff across more than one health care organization.
Electronic Medical Record (EMR): An electronic record of health-related information on an individual that can be created, gathered, managed, and consulted by authorized clinicians and staff within one health care organization.
Personal Health Record (PHR): An electronic record of health-related information that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared and controlled by the individual.
Health Information Exchange is the electronic movement of health-related information among organizations according to nationally recognized standards.
Regional Health Information Organization (RHIO): A health information organization that brings together health care stakeholders within a defined geographic area and governs health information exchange among them for the purpose of improving health and care in that community.
This MHA Issue Brief was prepared by Shel Gross, Director of Public Policy at the MHA of Wisconsin and MHA Regional Policy Council Representative for HHS Region V.
- Doctors are Prejudiced Against Patients with Mental Health Disorders, Medical News Today, June 23, 2007, Report on The Royal College of Psychiatrists Annual Meeting.
- A Majority of Consumers Favor Secure Electronic Health Information Exchange, Attitude and Opinion Research Supported by the eHealth Initiative Foundation, May 1, 2007.
- Attitudes of Americans Regarding Personal Health Records and Nationwide Electronic Health Information Exchange, Markle Foundation, October 2005
- National Consumer Health Privacy Survey 2005, California Health Care Foundation.
- Health Information Technology in the United States, 2008: Where We Stand. Blumenthal, D., et.al, Robert Wood Johnson Foundation: http://www.rwjf.org/qualityequality/product.jsp?id=31831&c=EMC-CA142
- Researchers Callf or Rapid Learning Through Electronic Health Records to Advance Medical Knowledge, Improve Care, Health Affairs, press release, Jan. 26, 2007
- The first five items are from Health Information Technology (HIT) and Health Information Exchange (HIE): What Value Do They Offer to Consumers? National Partnership for Women and Families
- National Partnership for Women & Families and the Consumer Partnership for eHealth webinar briefing, "Access, Control and Protection of Health Information in an Electronic Environment",August 7, 2008; information presented to 51.30 Workgroup, Wisconsin Department of Health and Family Services, 2007
- Compelled Disclosure of Health Information, Journal of the American Medical Association, 6/28/06, v.295, #24
- Blumenthal, et.al., op. cit.
- National PartnershipWebinar, op. cit.
- David Brailer, former national HIT coordinator, quoted in a Health Affairs press release, Health Information Technology Will Enable Big Savings, But Much Work Remains to Be Done, says Brailer, Feb. 15, 2007
- Health Affairs, Press Release: Hitting Obstacles In Health IT, Dec. 11, 2007
- From an announcement of a Special Open Door Forum on Electronic Health Records Demonstration
- Department of Health and Human Services, Office of the National Coordinator for Health Information Technology, Defining Key Health Information Technology Terms, April 28, 2008