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Sharing clinical notes with patients

Fant, Catherine T. PhD, RN-BC; Adelman, Deborah S. PhD, RN, NE-BC

doi: 10.1097/01.NPR.0000524668.09222.1a
Online exclusive

Abstract: Patient portals are access points to patient information, meeting Centers for Medicare and Medicaid Services incentives. Providing patients with access to clinical notes has garnered positive feedback with few concerns. This article addresses the latest literature on patient access to clinical notes and offers suggestions for NPs in their use.

Catherine T. Fant is a professor of nursing graduate programs at Kaplan University, Chicago, Ill.

Deborah S. Adelman is a professor of nursing graduate programs at Kaplan University, Chicago, Ill.

The authors have disclosed no financial relationships related to this article.

Patients have had legal access to their medical records since 1996 when the Health Insurance Portability and Accountability Act (HIPAA) granted this privilege.1 The Centers for Medicare and Medicaid Services' meaningful use of monetary incentives for increasing patient engagement, along with the drive for greater transparency in healthcare, has accelerated patient information sharing.2 Despite these initiatives, it has been a slow process to find ways for patients to access their records.

With the advent of electronic health records (EHRs) and, in particular, through secure online patient portals to EHRs, patients are now able to more readily access their medical information. Access to EHRs can provide patients with the ability to see many aspects of their medical information, such as test results, lists of medications (and the ability to obtain prescription refills), and the ability to make appointments, communicate electronically with their providers, and obtain educational materials. Nevertheless, the amount of information patients can view differs from one organization to another.

Sharing clinical notes with patients is a critical step in increasing patient engagement and transparency, but there are unanswered questions regarding the process, such as: Does it matter how or what is written in the notes? How will patients react to what they read? Should NPs share notes with all patient? What are the legal implications in relation to sharing notes? Furthermore, the question of whether the healthcare organization already shares clinical notes is of importance. If it does not, are there preparations underway to share the clinical notes with patients? What thoughts and concerns, if any, arise among staff members considering sharing clinical notes with patients?

There is no question that patients have a legal right to see their medical records; the question lies in how patients access these records and how NPs approach writing easily accessible clinical notes. Patients can access their records by asking for a paper copy or accessing them through a patient portal, which is the access point to their EHR. Once patients register to access the portal, they can view the information they are given permission to view, which varies by healthcare organization. The sharing of clinical notes is one of the last aspects of the record that patients are now able to access.

The literature regarding clinical notes that are accessible through patient portals does not address the NP and the patient's role in this process. While this is clearly an area that needs research, it is worth examining what is in the literature related to healthcare providers' application of and feelings about patient portals and access to clinical notes. However, there is an additional gap in the literature because little to no research has been conducted with other groups of patients, including those with specific medical diagnoses (such as cancer and behavioral health issues), different types of providers (particularly NPs), and additional specialties besides primary care.

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Background

Many studies examining clinical note sharing have involved surveying these groups (for example, primary care physicians and their patients, hospitalized patients, patients with cancer diagnoses, and patients with chronic disease) before and after implementation. As a whole, the findings have been positive for both patients and providers. Most concerns are related to providers who had not yet shared clinical notes and felt sharing the notes would interfere with their workflow and cause worry or confusion among their patients.

However, the providers who did share their notes felt that such access would increase communication; strengthen relationships with patients; provide an additional avenue for patient education; improve coordination of care as well as patient safety and satisfaction; ensure patients were more prepared for visits; and provide greater hope and control of care.3-11 Participating providers reported very little impact on their practice.6,12 However, a few reported changing how they composed their notes for behavioral health issues, cancer, obesity, and substance abuse, and some providers stated their notes had improved.6

The process of using or moving to shared clinical notes can be difficult for organizations. Walker and colleagues created a process known as OpenNotes, which can be used by healthcare providers and includes free copyrighted materials that provide strategies to assist clinical note sharing.3-5 The first research testing sharing clinical notes was done by primary care providers at Beth Israel Deaconess Medical Center in Massachusetts, Geisinger Health in Pennsylvania, and Harborview Medical Center in Washington in 2010, involving 105 primary physicians and 13,564 patients.

Both providers and patients were surveyed to determine the effects of patient access to clinical notes. Some initial findings (which have been supported by later research) included patients feeling more in control (77% to 87%) and improved medication adherence (60% to 78%). The effects on providers included longer patient visits (0% to 5%), answering questions between visits (0% to 8%), a change in documentation (3% to 36%), and spending more time composing notes (0% to 21%). Most respondent providers (995) did not allow patients to approve notes.4 Since this study, the U.S. Department of Veterans Affairs (VA) and 50 health systems in 35 states are now actively sharing clinical notes.5

Additional research continued to examine the sharing of clinical notes with primary care physicians and patients at these three sites.6-8 These studies revealed several positive aspects of sharing clinical notes with patients, including improvement in medication adherence, communication, understanding of plans of care, and patient and family engagement; a desire to continue to access the notes; a greater involvement of families and/or caregivers with the patient's care; and e-mail reminders for patients.8

Patients were more positive before and after they reviewed their clinical notes, with 90% remaining enthusiastic after reading their notes; however, prior to reading the notes, a few patients expressed generalized concern about reading them.6 Nevertheless, patients felt they had more control of their care after reading the notes, a better understanding of their health issues and plans of care, a sense they were better prepared for future visits, and more hope for the future.6,7,10-13 One area not addressed for patients was mental health and behavioral records.14 The most significant outcome was the patients' increased willingness to be adherent to their medications.6-8,10,11,15

Bresnick noted that additional support for improving medication adherence may come from allowing patients to read their clinical notes prior to a visit, in which rationales for medications could be explained and reinforced.16 Patients also expressed that notes helped them better understand their health status by reinforcing and reminding them what their providers had told them. Patients also stated they had greater trust in their providers and were more willing to adhere to their treatment regimens, including medications, and became more engaged in their care.10,15 Patients who expressed concern about the privacy of their information still wanted to read their clinical notes.17

Research has examined the sharing of clinical notes in behavioral health. Dobscha and colleagues surveyed the attitudes of mental health providers at a VA facility and found that these providers had positive attitudes in regards to providing patients access to their clinical notes but were ambivalent about sharing mental health notes.13 This ambivalence needs to be further investigated along with support for providers as they consider sharing notes. In an editorial, Kahn and colleagues discussed what sharing clinical notes with patients dealing with behavioral health issues might entail.14 They addressed how patients with behavioral health issues might react to notes that described how they are feeling and/or behaving.14 They wondered if access to clinical notes could lead to a disruption in the patient/provider relationship but felt the transparency that resulted from sharing notes might help patients more actively deal with mental health issues and perhaps even help diminish the stigma of having a behavioral health illness. Therefore, the authors suggested that composing notes that describe behavior in a nonjudgmental manner would be a more effective approach to documenting. It was hoped that reading these types of notes would give patients the energy to do something about their problems that lecturing failed to accomplish.14

Weinert examined giving patients and family members access to progress notes while patients were hospitalized.12 The findings indicated that 74% to 86% of patients and families were able to understand the progress notes. Still, 16% had issues with not understanding the notes, and patients had little concern for the privacy of their information.7,12

Jackson investigated patients sharing their clinical notes with family and friends.7 The majority of patients (55%) who accessed their notes wanted to share them with others. Twenty-one percent shared their clinical information with family or friends. Retired individuals, those not working, and men were the most likely to share their information.7

Zulman examined the willingness to share clinical notes among veterans and found 79% (62% with a spouse, 23% with child, and 15% with another family member) were willing to share their clinical notes with others.18 Bell noted that sharing clinical notes with caregivers provided them a better understanding of the patient's health status.15 There was no difference between those who wanted to share and those who did not want to share notes and concerns about privacy.15

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Considerations for sharing clinical notes

Despite the growing acceptance and praise from providers and patients, there are still concerns about the impact of sharing clinical notes. Both MD Anderson Cancer Center and the Mayo Clinic withhold access to lab, radiology, and pathology results for a few days so providers can speak with patients prior to seeing the results.19 Patients who do not have access to the Internet or those who have issues with understanding English are at a disadvantage. In addition, there are still issues with how providers write their notes knowing patients will read them; this could lead some to question whether or not providers edited their notes. Some providers have expressed concern that reading clinical notes may cause undefined harm to their patients.15,20

Legally, many questions can be resolved if the legal system adapts to meet the changing roles of patients and their EHRs. Patients are not only reading their health information but adding to and modifying it. Currently, the patient may identify issues with content, want errors removed, or have content modified.21 HIPAA allows patients to ask that amendments be made to their record; however, providers are still given the ultimate authority to make the final decision related to these changes.21

In addition, the provider is still considered the “owner” of the record.22 Because patients are adding to and modifying their records, and patient medical devices are inputting data into EHRs, ownership needs to be clarified. Disputes regarding what is in the patient's records need to be handled more efficiently.15

Transparency of the clinical record can increase patient safety because there will be more individuals viewing the content. Mistakes or errors of any kind can be identified and steps taken to correct them. However, it is not clear how the process of remediating mistakes and errors will occur. Transparency may reduce liability problems because of greater trust in the provider, more open communication to deal with disagreements or mistakes, and improved documentation. Providers need to encourage patients to read notes to help ensure accuracy and become active participants in their care and decision making.

While Kahn and colleagues advocated behavioral health patients be given access to their records (unless it would in some way harm the patient), HIPAA currently prevents access to behavioral health notes only if the notes are in a separate part of the EHR.14,22 Several states have overridden HIPAA and allow patients to access these notes.21

Other issues arise with reporting abuse of children, spouses, and older adults. Reporting child abuse is required by all states, but not all states require such reporting for spouses and older adults. There is concern expressed from patients who are abused about having their information in an online record that might allow their abusers to access the content. Therefore, abused patients may not tell their provider about the problem. It is worth considering whether this content should be kept separate or hidden from the clinical notes that would be available online.21

The sharing of patient information with family, caregivers, and friends raises privacy concerns, especially with the sharing of passwords. However, having a separate access process should minimize that risk. Another concern (in particular for providers) would be if patient information is posted on social media, which might potentially harm the providers' reputations. At present, there is little recourse for the removal of such information. Consequently, legal action to protect providers from defamation needs to be put in place.21

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Sharing clinical notes

Moving to shared clinical notes is a process that each healthcare organization must establish due to varying patient portals and EHR systems. Training and education are vital parts of the process and should be carefully considered before making any decisions. For example, Geisinger Health System and Beth Israel Deaconess Medical Center have reported how their providers share clinical notes. Both systems allow providers to exclude patients from viewing their clinical notes. Geisinger has excluded patients between ages 12 and 17 from viewing their notes in order to defer any issues with parents asking to view their children's clinical notes.23,24

Eighty-five percent of providers at Geisinger share their clinical notes and almost all at Beth Israel.24 Both facilities implemented the OpenNotes process through pilot processes in order to gain “lessons learned.” Champions of the process were identified and supported the providers in their organizations as they moved forward with this implementation. Providers were encouraged to share their thoughts, questions, and concerns. Patients were notified of this additional access to their information via patient portals along with how their questions could be answered.24

When an NP chooses to share clinical notes with patients, questions that need to be considered include:

  • Can an NP opt out of sharing a patient's clinical notes?
  • Will all clinical notes be shared or some hidden?
  • Will knowing that a patient will be reading his or her clinical notes affect what is written?
  • Will patients access the notes through their patient portal or receive a paper copy?
  • What mechanism should be in place if a patient disagrees with the content of a note?
  • Are there issues with accessing and using patient portals?25

Because sharing clinical notes is becoming more commonplace, some considerations have to be taken regarding steps patients have to go through to access their notes, such as registering for the portal, accessing the portal, and accessing the notes. The first step is encouraging patients to register for the patient portal.

Once in the portal, navigating through it needs to be as simple as possible with sufficient help available if issues arise. Feedback from patients regarding the usability of the portal needs to be solicited in order to make changes (if needed). A process needs to be put in place that handles patient questions about what they have read, especially if they have concerns or need clarification.26

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Writing clinical notes

Writing clinical notes is something all healthcare professionals learn during their prelicensure education. When an NP shares clinical notes, questions arise as to what changes should or should not be made in clinical notes as well as whether they should all be shared. The Agency for Healthcare Research and Quality (AHRQ) has listed suggestions to make the clinical notes more understandable for patients (available online at http://bit.ly/2sfRj8o) (see AHRQ recommendations to improve clinical notes).26

Many studies are being conducted regarding the barriers that affect patients accessing patient portals. Those who are less likely to access the patient portal include racial and ethnic minorities; older adults; patients with low education, incomes, and computer literacy; and patients with negative attitudes who do not have trusted relationships with their providers.27 However, patients with chronic illnesses, such as diabetes mellitus, are more likely to access a patient portal.28

Klein and colleagues also presented ideas on how to create clinical notes in an environment that would more likely improve accessing and reading the notes. Although both sets of recommendations overlap, those by Klein and colleagues are more detailed and remind providers to follow institutional policies when dealing with clinical notes patients can access.29

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Conclusion

Overall, the use of clinical notes has resulted in positive outcomes for patients, including improved medication adherence, more control of their care, and better understanding of their plan of care. Providers have also observed positive outcomes, such as improved communication and strengthening of the relationships with patients and improved coordination of care. Both groups expressed concern regarding patients becoming worried or concerned about what they read and understand. More studies need to be conducted looking at a wider variety of patient populations, different providers, and specialties.

For many patients, access to a patient portal is important in order to access their clinical notes; however, there are many factors that have been found that impact portal use (age, gender, computer and health literacy, income, race, ethnicity, education, diseases, relationships with providers, income, and negative patient attitudes).27 It is critical that these patients be provided with the proper resources, education, and support so they can access the portal. Once patients have accessed and reviewed the portal, they will need encouragement, education, and support to read their clinical notes. The NP is in the ideal position to empower and enable their institutions and patients in moving forward with sharing clinical notes.

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AHRQ recommendations to improve clinical notes26

  • Minimize abbreviations and medical terms to avoid confusion
  • Present information in a way that gives the patient the “full picture” of what is occurring
  • Use this process of sharing to more fully engage patients in a dialogue
  • Avoid any terms that are judgmental, and reinforce the patient's positive behaviors
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REFERENCES

1. Health and Human Services. Individuals' right under HIPAA to access their health information 45 CFR § 164.524. 2015. http://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html.
2. Centers for Medicare and Medicaid Services. Electronic health records (EHR) incentive programs. 2016. http://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/index.html.
3. Trossman S. OpenNotes initiative aims to improve patient-clinician communication, care. Am Nurse. 2013;45(5):10.
4. Walker J, Leveille SG, Ngo L, et al Inviting patients to read their doctors' notes: patients and doctors look ahead: patient and physician surveys. Ann Intern Med. 2011;155(12):811–819.
6. Delbanco T, Walker J, Bell SK, et al Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead. Ann Intern Med. 2012;157(7):461–470.
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Keywords:

clinical notes; electronic health records; OpenNotes; patient portals; progress notes; therapy notes

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