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Patients are increasingly asking for their health data. Yet, little is known about what motivates patients to engage with the electronic health record (EHR). Furthermore, quality-focused mechanisms for patients to comment about their records are lacking.
We aimed to learn more about patient experiences with reading and providing feedback on their visit notes.
We developed a patient feedback tool linked to OpenNotes as part of a pilot quality improvement initiative focused on patient engagement. Patients who had appointments with members of 2 primary care teams piloting the program between August 2014-2015 were eligible to participate. We asked patients what they liked about reading notes and about using a feedback tool and analyzed all patient reports submitted during the pilot period. Two researchers coded the qualitative responses (κ=.74).
Patients and care partners submitted 260 reports. Among these, 98.5% (256/260) of reports indicated that the reporting tool was valuable, and 68.8% (179/260) highlighted what patients liked about reading notes and the OpenNotes patient reporting tool process. We identified 4 themes describing what patients value about note content: confirm and remember next steps, quicker access and results, positive emotions, and sharing information with care partners; and 4 themes about both patients’ use of notes and the feedback tool: accuracy and correcting mistakes, partnership and engagement, bidirectional communication and enhanced education, and importance of feedback.
Patients and care partners who read notes and submitted feedback reported greater engagement and the desire to help clinicians improve note accuracy. Aspects of what patients like about using both notes as well as a feedback tool highlight personal, relational, and safety benefits. Future efforts to engage patients through the EHR may be guided by what patients value, offering opportunities to strengthen care partnerships between patients and clinicians.
As the trend toward greater transparency accelerates in health care, clinicians with electronic health records (EHRs) and patient portals are inviting patients to view online laboratory results, medication lists, and more recently, visit notes [
Although clinicians often report negative experiences with the EHR, patient attitudes about the EHR may be more neutral or even positive [
Even though millions of patients can log on to patient portals to read notes, we understand little about what they value in doing so, perhaps because information sharing has been largely one-way and passive. Opportunities to more effectively connect with various patient populations and family care partners through shared notes are vast, but relatively under-explored [
To learn more about the patient experiences with their notes, we piloted an online OpenNotes patient reporting tool as part of a quality improvement initiative [
The patient reporting tool was designed together with patients and family members, as well as with Patient Relations and Health Information Management personnel, Patient Safety leadership, clinicians, and other stakeholders. This multidisciplinary team of stakeholders met every other week for nine months to plan the reporting tool and supporting patient education materials, including a patient FAQ specifically designed for the project [
Respondents who found the opportunity to read and provide feedback on notes to be “very valuable” or “somewhat valuable” were asked: “What do you like about reading or providing feedback on your note?” We chose this broad exploratory question intentionally because there is little existing data on why patients engage with their health data, how they feel about reading notes, or what benefits they may perceive from a feedback tool linked to their notes. We used this expansive approach because we did not have a preference regarding whether patients responded to their attitudes about reading notes or about using the reporting tool, given that both could inform patient engagement strategies. We anticipated there would be some overlap in responses since patients had to read notes in order to use the tool, but we also hypothesized that some patients may value reading notes alone, and simply use the tool to share this information. Finally, although we considered asking two separate questions, we prioritized streamlining open-ended questions to prevent losing patient interest in completing the form. We anticipated that results from a single exploratory question could then inform more specific future queries as well as targeted interventions to further engage patients and care partners, based on what matters to them the most.
All patients with portal access and a visit note by a participating provider during August 2014-August 2015 were invited to participate in the feedback project. Patients received an email notification when a note became available including a link to frequently asked questions (FAQ) [
We launched the pilot quality improvement (QI) project with clinicians from 2 of 10 teams in our hospital-based primary care practice. OpenNotes was already implemented at our organization and providers were offered the opportunity to opt-out of participation. As part of the OpenNotes policies at our medical center, clinicians can also “hide” individual notes, such that they do not appear on the portal, although <1% do so (personal communication, Lawrence Markson, MD, Vice President, Clinical Information Systems, BIDMC). All other notes generated by the participating providers included the “My Feedback” link and an invitation for patients to use it.
Two researchers (SKB and MG) independently reviewed and coded a subset of responses to identify common themes. Through discussion, the two researchers merged the themes to develop a codebook, and then coded another subset of responses. Each subset comprised an independent (ie, not previously coded) 10-20% of the data. They repeated this process until no new themes were found. All disagreements were resolved through discussion. Next, the researchers used the codebook to separately code another set of responses and tested reliability between the two researchers (κ=.74). Finally, one researcher (MG) coded the remaining responses using the same codebook.
The proposal for implementation and evaluation of the OpenNotes patient reporting tool was reviewed by our institutional review board and determined to be a quality improvement program. Data collected were integrated into existing QI workflows and used in real time to improve care. Patient participation was voluntary. Patients were told that they, and their provider, might be contacted by Patient Relations personnel if their report pointed to a safety concern. Otherwise, the data populated an aggregate database from which we generated de-identified comments for this analysis. We informed patients that de-identified comments would be used to promote organizational learning and quality improvements. Further details of the methods and patient communications have been published elsewhere [
We analyzed consecutive reports submitted by patients and care partners over the 12 months of the pilot period. In total, 260 reports were submitted; of which, 256 (98.5%) reports indicated that the tool was valuable, and 179 (68.8%) reports included a qualitative response to what patients liked about the OpenNotes reporting tool process. Compared with patients who submitted a report but did not respond to the voluntary qualitative question, patients who provided a response were slightly older; otherwise patient characteristics were not significantly different between the two groups (data not shown). Responses highlighted a total of 8 key themes, presented below. Four themes pertained to what patients value about the content of notes, and the other four described what patients liked about using the reporting tool (for which reading notes was implicit).
For many participants, notes served as an extension of the visit. One patient noted:
I sometimes have white coat syndrome where I am a little nervous in the doctor’s office and then cannot remember all that was said. Reading the notes after my visits confirms what I have heard.
By far the most common theme, reading visit notes helped patients to better remember next steps. Many commented on turning to notes as a reminder of tests or other recommended follow-up.
Several participants alluded to the stressful nature of the visit:
I think it is a great way to double check I didn't miss anything if I was not feeling well or was too overwhelmed.
Patients liked reviewing what happened at the visit in the comfort (and pace) of their own homes:
Reading the note takes the burden off of me to remember the details of what we discussed and becomes a useful reference for me.
They also liked the ability to confirm or double-check the doctor’s recommendations independently:
If I forget something, I can go back and read the plan without having to bother the doc[tor].
Patients and CPs valued the opportunity to have access to records and results, stressing the importance of being able to view this information quickly and at any time. Participants found the notes particularly valuable because they provided context. One patient commented:
I like knowing what the results of my tests mean. The records [laboratory results] show the numbers but the notes provide the interpretation in regards to my personal health status.
Participants also liked having longitudinal access to notes, and the benefits of a consolidated reference, “all in one place.” Like an “encyclopedia on a shelf,” OpenNotes provided patients with a cohesive roadmap over the arc of their health journey:
It is now all on record for me to review…and not just after the consult. Allows for history.”
Patients noted a heightened sense of ownership of their records and their health when they could review and interact with their notes collectively and comprehensively over time:
Doctors’ notes are my medical history and until OpenNotes patients had no insight into what is ultimately my medical history.
Reading notes helped patients gain confidence in their providers,
We have had a funeral and a hectic week. I felt like someone cared. May seem quite simple but it was a nice human touch. I am a nurse and I am impressed.
The invitation to read notes and provide feedback was particularly appreciated by care partners who support vulnerable patients. In particular, they found notes essential to the coordination of care for their loved ones:
We are grateful to receive “notes” to be able to review the visit and procedures (if any) performed. Especially helpful for older patients who may have hearing and/or some cognitive [or] memory loss.
Patients liked the option to give their note to care partners too:
Patients and care partners commonly noted that what they like about reading notes and providing feedback is the new ability to confirm the accuracy of the note and catch potential errors. As one patient noted,
[Reading] my notes allows me to see how well I am communicating my issues, which leads to how well my doctors are hearing and documenting my issues. It also allows me to catch errors.
While some clinicians worry that patient-found mistakes may lead to casting blame or trust erosion, several participants explicitly commented on understanding human fallibility and wanting to play a role, alongside their provider, in contributing to note precision:
Patients frequently noted that they liked reading notes to
I like that level of communication and the ability to see the doctor’s thought process. The more open communication there is, the better care I, as an active participant, have access to.
Patients also saw engagement through OpenNotes and the reporting tool as a two-way street:
Reading the notes can only make me come to my appointments better prepared and help my team understand what issues are important to me and what I need them to hear.
Moving away from the traditional paternalistic view of medicine, the reporting tool encouraged shared agency for health:
Finally, several patients and CPs commented on the level of detail, articulation, and precision in the notes. The comprehensive nature of notes helped patients feel that their provider “knows” and cares about them, strengthening a therapeutic alliance through shared values and goals.
Patients and CPs often described reading notes as playing a significant role in improving communication between patients and providers, while also increasing learning. As one patient stated,
I like the educational and improvement potential of the process. I learn. My provider learns. All good.
Several reports also emphasized that reading notes and providing feedback affords patients a way to share information without bothering their providers:
Patients embraced the opportunity for feedback on many levels: receiving feedback about their health and how they are doing in various aspects of their care, and giving feedback to their providers. Many patients liked the tool because it offered a new way to share positive feedback:
This is a way to [confidentially] reflect a patient’s reaction to a provider without “causing trouble.” I will use it a lot.
Another noted:
This new project, [OpenNotes] Feedback, is terrific. Finally. Because it is [confidential] I will use it with a mental comfort I have not had till now—over 10 years.
Some patients read notes as a self-feedback mechanism—a way to check how well they were communicating and understood by their providers.
Patients also valued feedback as a way to contribute to the note, for example adding missing information patients found important. Several comments reflected an understanding of quality improvement and a desire to participate in making care better:
I am happy that you asked for feedback—if only so that I can say how helpful it is and how pleased I am to have this site available to me.
As above, patient comments drew a link between the invitation for feedback and the effect of inclusivity on strengthening patient-clinician relationships:
Being able to provide feedback is very important to me as well. I feel it keeps me connected to my health care providers.
With little knowledge on what motivates patients to engage with their health data, we sought to characterize what patients value about reading visit notes as part of a quality improvement initiative. Our findings highlight several insights. Patients and care partners described priorities that can be leveraged to design patient portals that better support patients and families while improving quality of care. For example, participants liked reading notes to remember and confirm next steps. They felt less overwhelmed and more proactive in their care as a result of reading notes. Patients valued the ability to go back to their health information at their own pace and leisure as an enduring, longitudinal resource; open bidirectional dialogue with clinicians and the ability to ask questions with “non-embarrassing” face to face dynamics; and quicker access to notes and results, an established ambulatory care safety priority [
Participants also particularly valued the ability to check note accuracy and to share notes with family care partners. A feedback mechanism that encourages commentary from patients and care partners, who may catch possible documentation errors or clinically important oversights in the notes, may also improve portals and care. Poor electronic health record interoperability is a recognized problem [
Shifting the nexus of control away from clinicians alone to one that is shared with patients and families and reflects their values has been described in the literature as patient-centered care, person-centered care, and relationship-centered care, among other terms [
Portals and electronic information are never a substitute for meaningful face-to-face time with clinicians. But although doctors worry that computer use during shorter visits can make clinical interactions feel impersonal [
The availability of notes may also make face-to-face time more effective. Some patients felt more attentive or present during visits because they didn’t need to take copious notes, knowing they could access the documentation later. Because patients can go back to notes repeatedly and at patients’ own leisure and pace, reading notes may extend the visit, and clinicians may find opportunities to take advantage of this extra “time with patients.” With patients as a consistent audience to notes, clinicians may even begin to adapt note-writing in the future to be more personalized, trust-building, or even therapeutic [
What patients value about OpenNotes: further engaging patients who use the portal.
What patients value | Implications for patient and family-centered quality of care | ||
Confirm and remember next steps | Improve adherence and follow up |
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Unburden patients during and after visit, feel less overwhelmed Enable patients to track progress over time; potential for increased “ownership” of healthcare issues (patient accountability) Facilitate patient engagement in diagnostic process |
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Easy and long-term access to EHR as a consolidated reference at patient’s own leisure and pace | |||
Improve patient experience Foster humanism in patient care |
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Encouragement and “whole person” care | |||
Sharing information with care partners | Better support care partners with comprehensive clinical information Potentially avert medical errors or preventable readmissions for vulnerable patients due to poor information transfer |
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Accuracy and correcting mistakes | Empower patients to identify and correct documentation errors |
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Partnership and engagement | Strengthen patient-clinician relationships including enhanced trust Activate patients in their care Facilitate patient engagement in diagnostic process |
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Bidirectional communication and enhanced education | Open transparent dialogue with emphasis on inclusivity Non-intrusive or non-embarrassing way to ask questions Provide enduring resource, and “power of print” for visual learners |
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Importance of feedback | Involve patients in QI efforts Create mechanism for positive patient feedback; curb provider burnout |
Finally, we were struck by patients’ interest in praising their providers and their description of positive emotions stemming from reading notes. At a time when clinician burnout is in the spotlight [
Although these reports reflect the perspectives of patients and care partners who are already engaged by reading notes, organizational exploration of what patients value about note transparency can have a large impact, considering that over 15 million patients have access to their notes across the country today [
Our findings are limited by the small size of a pilot initiative at a single institution. Respondents likely represent a self-selected population, biased toward activated patients who are registered on the patient portal, use OpenNotes, and are from one geographic area. Patients at our medical center are largely white and more likely to have a 4-year college degree or higher. This quality improvement initiative was designed specifically for one health care organization, limiting generalizability to other patient populations. Although a formal analysis of additional sites is beyond the scope of this report, as the OpenNotes reporting tool has expanded to other clinical settings and organizations, we are seeing similar themes surface, reflecting our findings.
In summary, as EHR transparency spreads, new ways for patients to engage with their data in ways that matter to them most and to comment on their records are needed. Many aspects of what patients and care partners like about reading notes and providing feedback have important implications for improving patient and family-centered quality of care, safety, and patient-clinician relationships, and can also inform future patient engagement strategies and patient portal design.
The authors thank Melissa Anselmo, Hannah Chimowitz, Tom Delbanco, Rossana Fazzina, Beth French, Amy B Goldman, Heidi Jay, Margaret Jeddry, Jing Ji, Gila Kriegel, Suzanne Leveille, Julia Lindenberg, Lawrence Markson, Roanne Mejilla, Caroline Moore, Elana Premack-Sandler, Barbara Sarnoff Lee, Ken Sands, Qiang Wang, Guoping Xu, and the Patient and Family Advisors at Beth Israel Deaconess Medical Center for their valuable contributions to the OpenNotes patient reporting tool. They also thank the patients and care partners who used the tool and shared their insights. Portions of this manuscript were previously presented at the Society of General Internal Medicine national meeting 2015, Toronto, Ontario; the National Patient Safety Foundation Congress 2016, Scottsdale, Arizona; and the 2016 American Academy on Communication in Healthcare Research Forum, New Haven, Connecticut. This study was supported by a grant from CRICO Risk Management Foundation of the Harvard Medical Institutions.
None declared.