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Editorials |

Access to the Medical Record for Patients and Involved Providers: Transparency Through Electronic Tools FREE

Thomas W. Feeley, MD; and Kenneth I. Shine, MD
[+] Article and Author Information

From University of Texas M.D. Anderson Cancer Center, Houston TX 77030, and University of Texas System, Austin, TX 78701.


Potential Conflicts of Interest: Disclosures can also be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M11-2698.

Requests for Single Reprints: Kenneth I. Shine, MD, University of Texas System, 601 Colorado Street, Austin, TX 78701; e-mail, kshine@utsystem.edu.

Current Author Addresses: Dr. Feeley: University of Texas M.D. Anderson Cancer Center, 1515 Holcombe Boulevard, Houston, TX 77030.

Dr. Shine: University of Texas System, 601 Colorado Street, Austin, TX 78701.


Ann Intern Med. 2011;155(12):853-854. doi:10.7326/0003-4819-155-12-201112200-00010
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Physicians' notes are one of the oldest tools in medicine and have evolved into today's electronic medical record. As we move toward greater transparency in health care, one emerging concept is that sharing information among patients, caregivers, and involved clinicians can improve efficiency, decrease redundancy, and decrease cost (1). The concept of improving health care delivery by sharing the medical record with the patient is not new (2). The Obama administration highlighted the importance of improved information technology by directing incentive payments totaling $27 billion over 10 years to encourage the meaningful use of electronic health records. One of the meaningful use objectives is to provide patients with an electronic copy of their health information (3). The electronic medical record and Internet technology, using patient and involved provider portals, provide new opportunities to engage our patients and other providers in care.

In this issue, 2 articles address the primary care physician providing others with access to a patient's electronic health information. Walker and colleagues (4) surveyed patients and their primary care providers about their attitudes before initiation of a voluntary program of sharing the primary care physician's notes with patients. Zulman and colleagues (5) solicited Veterans Affairs (VA) patients' views about sharing the contents of their personal health record with their caregivers and other involved providers outside the VA system. Both studies carefully test the waters of sharing medical records. The results are hardly surprising.

The 37 856 patients in Walker and coworkers' study came from primary care practices in 3 locations throughout the United States. Patients were uniformly enthusiastic about the opportunity to see what their doctors had written about their visits and that interest did not differ with demographic characteristics or underlying medical conditions. Many patients also indicated an interest in sharing their primary care physician's notes with other caregivers and providers. However, the primary care physicians were less enthusiastic. Those who agreed to participate in the program believed that communication and satisfaction would be improved, whereas those who declined feared adverse consequences, including patient confusion. Many were concerned that the open notes would lead to longer visits and more demands on their time between visits.

Zulman and colleagues studied 18 471 patients throughout the VA system and found that 4 out of 5 were interested in having their health record shared with caregivers and clinicians outside the VA system, but they differed in what elements of the record they were willing to share. Of note, the VA proposal involved sharing laboratory results, secure communication, and medication lists in addition to encounter notes.

It is worth noting that both surveys were done in advance of implementing any actual record sharing. Why such caution? Privacy concerns and compliance with the Health Insurance Portability and Accountability Act of 1996 seemed to surface in all such discussions. However, patients have the right to view their own medical record and should be allowed to control who else sees it. Current electronic technology makes it possible not only to enable patients to view their own record but also to grant permission for others to see it, be it a family member, a caregiver, or an involved provider in another location. Such sharing of information could greatly improve communication, engage patients in their care, and help them formulate questions in advance of a visit on the basis of prior notes and test results.

At the University of Texas M.D. Anderson Cancer Center, we developed and implemented access to our electronic medical record for patients and their referring physicians by using our electronic medical record and a secure Web-based portal. Despite physician concerns that the system would increase workload and create unnecessary anxiety for patients, few have voiced complaints since the system went live in May 2009. Despite little promotion of the site to patients, to date more than 40 000 individuals have viewed their records over 605 000 times. In that same period, more than 1300 referring physicians accessed the records of the patients they referred to us over 28 000 times. Currently, 84% of our active patients have obtained access to their electronic records. As a result, they are more informed about their care plan and diagnostic results and ask smarter, more focused questions. There have been no adverse consequences and generally positive feedback from patients and physicians. Although physicians occasionally complain about the time it takes to explain something they wrote, feedback from both patients and physicians has generally been positive. Patients have become avid readers of their notes—their 2 most common requests are for a correction of something recorded incorrectly and for a simple method of translating medical terminology within the record. Our referring physicians are happy with the tool, and we are planning to cease mailing records to referring physicians.

Informed by the results of these 2 studies and our experience at M.D. Anderson, where should we be going? We believe that the direction is clear: Technology is a powerful tool that can improve transparency in health care. Electronic health records should be used to engage patients, their caregivers, and others in the health care delivery system. Expanding who uses the records and how they use them promises to facilitate communication, decrease redundant testing, and enhance our care delivery in ways we have yet to imagine. However, health care providers must ask and seek answers to critical questions as we move ahead.

How will patients use their record? Will they share it with family members, and other physicians, and others? Will they feel more engaged in their care? Will their age affect how they use the record? Will they use it when they see another health care provider to possibly prevent another blood sample from being drawn or x-ray being taken or simply to help another provider gain an understanding of previous therapy? Will patients transfer their health information into personal or online repositories of health data, such as those created by Microsoft and Dossia (6)? How can we demonstrate the effect of record sharing on quality of care? Could electronic translators and other tools aid patients in understanding their records? Can patients participate in the entry of data into their own records? Will providers' notes change if they know patients will read them? Might notes evolve such that they help patients better understand their condition and treatment plan?

Any health care organization with an electronic medical record and a secure Internet portal can provide patients and referring physicians with real-time access to medical records from anywhere in the world, opening the door to levels of patient engagement and care coordination not previously possible. Yet, like any major change in our health care delivery system, we must study its impact to continuously improve implementation. As younger generations embrace technology, one of the oldest tools in medicine, the doctor's note, is in its infancy of reform.

References

Committee on Quality of Health Care in America.  Crossing the Quality Chasm. A New Health System for the 21st Century. Washington, DC: National Academies Pr; 2001.
 
Shenkin BN, Warner DC.  Sounding board. Giving the patient his medical record: a proposal to improve the system. N Engl J Med. 1973; 289:688-92.
PubMed
CrossRef
 
Blumenthal D, Tavenner M.  The “meaningful use” regulation for electronic health records. N Engl J Med. 2010; 363:501-4.
PubMed
 
Walker J, Leveille SG, Ngo L, Vodicka E, Darer JD, Dhanireddy S. et al.  Inviting patients to read their doctors' notes: patients and doctors look ahead. Patient and physician surveys. Ann Intern Med. 2011; 155:811-9.
 
Zulman DM, Nazi KM, Turvey CL, Wagner TH, Woods SS, An LC.  Patient interest in sharing personal health record information. A Web-based survey. Ann Intern Med. 2011; 155:805-10.
 
Steinbrook R.  Personally controlled online health data—the next big thing in medical care? N Engl J Med. 2008; 358:1653-6.
PubMed
 

Figures

Tables

References

Committee on Quality of Health Care in America.  Crossing the Quality Chasm. A New Health System for the 21st Century. Washington, DC: National Academies Pr; 2001.
 
Shenkin BN, Warner DC.  Sounding board. Giving the patient his medical record: a proposal to improve the system. N Engl J Med. 1973; 289:688-92.
PubMed
CrossRef
 
Blumenthal D, Tavenner M.  The “meaningful use” regulation for electronic health records. N Engl J Med. 2010; 363:501-4.
PubMed
 
Walker J, Leveille SG, Ngo L, Vodicka E, Darer JD, Dhanireddy S. et al.  Inviting patients to read their doctors' notes: patients and doctors look ahead. Patient and physician surveys. Ann Intern Med. 2011; 155:811-9.
 
Zulman DM, Nazi KM, Turvey CL, Wagner TH, Woods SS, An LC.  Patient interest in sharing personal health record information. A Web-based survey. Ann Intern Med. 2011; 155:805-10.
 
Steinbrook R.  Personally controlled online health data—the next big thing in medical care? N Engl J Med. 2008; 358:1653-6.
PubMed
 

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Citing articles are presented as examples only. In non-demo SCM6 implementation, integration with CrossRef’s "Cited By" API will populate this tab (http://www.crossref.org/citedby.html).

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Early experiences with shared electronic health records in the VA healthcare system
Posted on December 22, 2011
Donna M., Zulman, Kim M. Nazi, Steven M. Asch, and Todd H. Wagner
Stanford University and VA Palo Alto Health Care System
Conflict of Interest: None Declared

In their editorial to our paper (1,2), Drs. Feeley and Shine pose questions to consider as health systems enable patients to access and share their electronic health records. The issues they raise are relevant and timely, and data emerging from the Veterans Affairs (VA) healthcare system provide some initial answers.

First, VA patients are embracing opportunities to take ownership of their medical records. In August 2010, President Obama announced the creation of a new "Blue Button" feature on the VA's personal health record, My HealtheVet (3). The Blue Button enables patients to easily download their health information and share it with providers and caregivers. During the Blue Button's first year, 311,863 (21%) registered My HealtheVet users downloaded their information, suggesting that patients' interest in sharing their health information is matched by their use of features that facilitate such sharing. On a minor point, while the VA does not yet enable patients to access encounter notes (contrary to the description in Drs. Feeley and Shine's editorial), this feature has been piloted and there are plans to incorporate it into My HealtheVet in 2012.

Second, as with medical care in general, it is the neediest patients who have the most to gain from the coming revolution in personal health records. Sicker veterans are using My HealtheVet and--perhaps contrary to the expectations of some--are eager to share their information. A disproportionate number of My HealtheVet users are in poor or fair health (40%, according to our survey, compared to 24% in the general veteran population) (2,4), and approximately 79% of these patients expressed interest in sharing their record with a caregiver or provider outside the VA system (2).

Finally, patients desire control over the specific components of their record that are available to individuals with whom they wish to share information. For example, among 4541 patients who expressed interest in sharing their information with non-VA providers in our survey, 57% were interested in sharing their medication lists but only 15% were interested in sharing their communications with VA providers (2). This finding suggests a need for tailored applications that allow patients to designate specific portions of their record that select individuals can access.

These early experiences from the VA's personal health record system provide insight into information-sharing preferences of patients who often have multiple chronic conditions and psychosocial comorbidities--the very patients who may stand to benefit most from a care network that is enhanced through information-sharing technology.

References:

1. Feeley TW, Shine KI. Access to the medical record for patients and involved providers: transparency through electronic tools. Ann Intern Med. 2011:155:853-4.

2. Zulman DM, Nazi KM, Turvey CL, Wagner TH, Woods SS, An LC. Patient interest in sharing personal health record information. A Web-based survey. Ann Intern Med. 2011;155:805-10.

3. Chopra A, Park T, Levin PL. 'Blue Button' Provides Access to Downloadable Personal Health Data. October 7, 2010. Accessed at http://www.whitehouse.gov.laneproxy.stanford.edu/blog/2010/10/07/blue- button-provides-access-downloadable-personal-health-data on 12/12/11.

4. U.S. Department of Veterans Affairs. National Survey of Veterans. 2001. U.S. Department of Veterans Affairs: Washington, DC: 2001. Accessed at http://www.virec.research.va.gov/DataSourcesName/NationalSurveyVeterans/2001NationalSurveyofVeterans.htm on 12/16/11.

Conflict of Interest:

None declared

Transparency -- AKA letting patients read their charts, by portal or anywhere else.
Posted on February 9, 2012
Mark A., LaPorta, General Internal Medicine and Healthcare Advocate
Mark Antony LaPorta MD FACP
Conflict of Interest: None Declared

One more step in the degradation of the medical record? Perhaps.

I thought about writing you but was finally inspired and moved to do so when I saw an e-card graphic that said, staid and sober, "Don't be offended. I'm not insulting you, I'm describing you."

How much valuable observation of the individual seated before me will not make it into the record because someone might be offended-- by a true statement?

How much valuable material will not make it in because EHR protocol shoe-horns data bits into pigeon holes?

How many correct and useful statements -- the basics of longitudinal reporting and the truest purpose of the chart-- will be lost; already at the mercy of endless re-iteration of disinterestedly collected so-called facts? How many patients can read a properly-recorded note written above the 12th grade level, nevermind comprehend nuance?

I was on a state medical association executive committee a few years ago charged with collating and disseminating recommendations for membership to use while shopping for EHR systems-- this, even before the "meaningful use" rule or lack there-of showed its true colors -- and my suggestion/insistence was DO NOT ALLOW THE RECORD SYSTEM TO CHANGE YOUR PRACTICE. We are the humans.

Do not allow record keeping to reduce the interaction to mechanics and measurements.

Lastly, I did thousands of SSA disability exams from 2000-2010. Some of the adjudicators loved that they could get an understanding of a real person they'd never met by reading my reports; some hated it because it brought up implications in the applications that had not previously been thought of, issues that were not entirely, shall we say, somatic. Guess who won?

I also had the privilege of reviewing the new VA record-keeping format, said to be amongst the best in the world. I saw process, continuity of logistics, and ease of reading. But the men in front of me, claiming to have been disabled, even believing it, had been looked at like a process and product all along: make the chart do what the chart is supposed to do, follow the patient. But time after time, no one had gone back to the beginning and found the original source of the problem -- not that I'm alleging malpractice, because, after all, it was standard. It was MISSION DRIFT: the process and product had become more important then the contemplation of the individual seated before me. Mission drift is a ubiquitous hazard.

I became an internist to contemplate the patient -- with the problem -- seated before me. And despite time and financial constraints, that's what I do best. Fortunately, at the present height of my game, to use a sports analogy, when I'm there time seems to stand still and understanding opens up. How do you put that in a chart that a patient will see? How do you take the problem back to basics -- not just proforma -- and still submit the CPT -- we were in on that fiasco -- so that the next reader really understands what has transpired?

I await your response.

Mark Antony LaPorta MD FACP

Let me state one of my biases: Lawrence Weed's 1956 "Problem Oriented Medical Record" (the origin of the so-called SOAP note) was ideal. That despite that much "history" is not subjective symptom and much "physical" is not objective.

Conflict of Interest:

I compete with your for intellectual primacy.

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