- Email: [email protected]
Patient access to electronic psychiatric records: A pilot study
Author’s Accepted Manuscript Patient Access to Electronic Psychiatric Records: A Pilot Study Pamela Peck, John Torous, Meghan Shanahan, Alan Fossa, William Greenberg www.elsevier.com/locate/hlpt
PII: DOI: Reference:
S2211-8837(17)30043-6 http://dx.doi.org/10.1016/j.hlpt.2017.06.003 HLPT237
To appear in: Health Policy and Technology Cite this article as: Pamela Peck, John Torous, Meghan Shanahan, Alan Fossa and William Greenberg, Patient Access to Electronic Psychiatric Records: A Pilot Study, Health Policy and Technology, http://dx.doi.org/10.1016/j.hlpt.2017.06.003 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting galley proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Patient Access to Electronic Psychiatric Records: A Pilot Study Pamela Peck1, Psy.D., John Torous1,2, M.D., Meghan Shanahan3, M.S., N.P., Alan Fossa4, William Greenberg, M.D1.
1. Department of Psychiatry, Beth Israel Deaconess Medical Center, Boston, MA 2. Division of Clinical Informatics, Beth Israel Deaconess Medical Center, Boston, MA 3. Veterans Affairs, Boston, MA 4. Beth Israel Deaconess Medical Center, Boston, MA Corresponding Author: Pamela Peck, Psy.D. Department of Psychiatry 330 Brookline Avenue Boston, Massachusetts 02215 Phone: (617) 667-0651 Fax: (617)-667-4735 Disclosures and acknowledgments: The authors would like to thank and acknowledge Janice Walker M.B.A and Suzanne Leveille, Ph.D. R.N. for their contributions to this study and paper. None of the authors report any potential conflicts of interest. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. Key Words: OpenNotes, Technology, Medical Records, Psychiatry
1
Abstract Background: OpenNotes, a national movement offering patients access to their doctor’s notes, lies at the intersection of health policy and health technology. Despite interest in OpenNotes, little is known about how such may be implemented in psychiatry departments using electronic medical records. This study reports on the first pilot project to examine the experience of patients and clinicians when open access to psychiatric records was provided within an ongoing treatment relationship. Methods: Fifteen clinicians in an outpatient psychiatry clinic in a Boston medical center agreed to participate in the study and 52 of their patients to participate. Those patients had the opportunity to read their progress notes through a patient site linked to an electronic medical record. Patients and clinicians were surveyed 20 months later. Results: Results from this select group suggest that open access to notes was perceived as helpful to patients and did not negatively impact the patients or the treatment relationship. In addition, our experience was that mental health clinicians could be engaged in the process of OpenNotes. Conclusion: This is the first study to implement and assess the impact of patients’ access to psychiatric records in an outpatient setting. Although many questions remain to be studied and a more diverse sample is needed for future research, the potential impact to enhance mental health treatment and the patient-clinician relationship is suggested for selected psychiatric patients. Policy around providing psychiatry patients access to their notes can be informed by reactions of both clinicians and patients.
2
Introduction OpenNotes is a national initiative that allows patients to read the visit notes their clinicians write about them. Sharing notes in this manner is a relatively new phenomenon in a medical world that has traditionally restricted access to documentation. While research on OpenNotes for primary care patients has been encouraging1, there is a lack of data on OpenNotes in psychiatry. The OpenNotes project was developed at the Beth Israel Deaconess Medical Center in Boston and included two other academic medical centers. It was the first study to specifically look at patient and provider experience sharing notes in a primary care setting. Preliminary clinical benefits were demonstrated for patients and the treatment relationship. Providers’ initial concerns that access to notes would create worry or confusion in their patients and that it would be a time burden were mostly unfounded [1]. However, implementation of open access for patients with mental health and/or substance abuse problems has been controversial and approached with caution. This was evident in the initial OpenNotes study where one of the three academic medical centers excluded patients with mental health related diagnoses while the other two centers permitted physicians to exclude individual patients from access. It is unknown how many patients were excluded with mental health diagnosis in this original OpenNotes or how many partook. Concerns with access to medical records for psychiatric patients are not new and are best captured in the title of a 1980 article from The American Journal of Psychiatry, ‘Patient Access to Records: Tonic or Toxin’ [2]. Some of the earliest data on the topic was reported in a 1979 study where patients were offered access to their records while on an inpatient psychiatric unit [3]. The results were generally supportive of open access, yet mixed. Most patients described being more active in their treatment, a better understanding of their problems and were in favor of access. On the other hand, half of the patients reported feeling upset in reading their notes. From a staff perspective, a large majority found patients’ access to records to be a useful therapeutic tool and supported continued access. Over half acknowledged that they altered documentation patterns to minimize patients’ upset and a quarter reported some harm occurred to one patient. Although these results are over 35 years old, they provide the most formative data on patient access to records for psychiatry and indicate both potential benefits and risks in psychiatric patients’ access to notes. The focus of later studies was identification of areas for patient harm. Puzzling psychiatric terminology, alarming comments, potentially offensive statements, personality characterization, and sensitive information from and about others were noted [4,5]. Potential factors contributing to patient “upset” in response to reading notes were suggested as younger age, unmarried status, lower social class, and suffering from non-affective psychosis [6]. 3
Legislation, political forces, and technological advances brought further attention to this issue. The Access to Health Records Act, which became law in November 1991, allowed patients to request health records and spurred further interest in understanding the impact of access to psychiatric notes. The advent of the Internet and the concomitant rise of online medical records have redefined the nature of access to records with patients’ notes now a single click away. The social context has also changed. There have been significant political shifts in our society as power structures have been questioned, relationships of mutuality and collaboration emphasized, and transparency encouraged. At this juncture, several concerns of mental health clinicians have been identified. The sensitive nature of mental health and substance abuse treatment as well as the acute and potentially reactive states inherent in some psychiatric illnesses contribute to clinicians’ doubts about the helpfulness of open access and highlight the potential for harm. Also, electronic medical records are now written for several constituencies, the patient’s physicians from other specialties who share the record, the insurance company to verify coding and service for reimbursement, and in the case of busy clinics, for the mental health clinician to note important facts to remember. In the current climate of fast paced psychiatric clinics there are more demands on clinicians’ out of session time for communications and 3rd party payers. Psychiatric providers are worried that open access to notes for patients would impact their work flow, lengthen brief clinical visits, require more time writing notes, and add time to respond to patient concerns outside of visits. The importance of studying OpenNotes in psychiatry has become a topic of increasing interest [8,9]. There is a lack of outcomes data on the impact of sharing these records. The Veterans Administration has published on their experience with OpenNotes in one mental health setting. The clinicians were ambivalent, although many of those surveyed had not used OpenNotes with their patient [9]. In order to begin to understand the impact of OpenNotes on psychiatric patients and clinicians, we conducted an exploratory pilot study of implementing OpenNotes. Methods In March 2014 the Psychiatry Ambulatory Service (P.A.S) elected to participate in the OpenNotes hospital-wide implementation at the Beth Israel Deaconess Center in Boston. Given that there was no previous systematic study of the use of OpenNotes in a mental health setting, the P.A.S. group of clinicians volunteered to participate in a pilot project with the goal of learning about the impact of open notes on patients and their treatment. After several discussions as a group, 100% of the staff (n=15) opted to participate in the pilot, initially selecting a minimum of 10% from their active ongoing caseload. The staff included 12 attending psychiatrists, two licensed social workers and one nurse practitioner. Providers were given freedom to include patients based on their clinical assessment. In addition, individual notes in the 4
system could be marked as “monitored” if the clinician determined that a specific visit should not be available for viewing. Six months into the pilot, most of the clinicians expanded their pilot list to include more active patients. A total of 568 patients were selected by their clinicians. The physicians and nurse practitioner met with patients primarily for psychopharmacological treatment, in 15-20 minute appointments, every few months or as clinically indicated. The social workers involved use focal intermittent therapy, meeting for 45 minutes, once or twice per month. At the inception of the pilot, the clinicians were provided guidance in staff meetings, reviewing a sample script of how to introduce the pilot to patients and a document addressing providers’ frequently asked questions. Some pilot patients were informed by their clinicians in a routine follow up appointment. All patients were selected based on the judgment of their clinician and those selected were mailed an introductory letter about the OpenNotes pilot from the director of the clinic. The letter included a brief description of the pilot and a handout with responses to patients’ frequently asked questions. All patients selected had personal access to the portal. Two post-intervention surveys, one for participating clinicians and one for patients, were developed for the pilot, based on the prior research, meetings with the OpenNotes team involved in the original study, and conversations with participating clinicians. Questions from the original OpenNotes protocol were modified, altering the language of the questions to be clear that we were asking about interactions specific to mental health care. With the approval of the I.R.B. at our medical center, the surveys were administered 20 months following the initiation of the pilot. Participating clinicians were invited by email to complete the provider post-intervention questionnaire, via a website called SurveyGizmo, and received three email reminders. Participating patients were invited to complete the patient post-intervention survey through PatientSite, the medical center’s secure portal, and received 2 follow up reminders. Surveys were linked to patients only via study identifiers and not name or other personal information.
Results Over the course of the pilot, 568 patients had access to their mental health notes through the patient portal. Of these, 171 patients read at least one mental health note. A total of 52 patients completed the post-intervention survey to report on their experience with Open Notes and of those 52, 45 had read their notes. Of these 45 patients, 92.7% identified as Caucasian and 7.6% as non-Caucasian. Although fifteen clinicians participated in the study, twelve mental health providers completed the study and filled out the questionnaire. Details on the patients and mental health clinicians in the study are provided below in Table 1. 5
PATIENT DATA Patient experiences with OpenNotes are reported below in Table 2. Only nine patients reported sharing their notes with others and the most frequent sharing was with another family member. Twelve patients who never read their notes completed the survey, although . There was no consistent explanation for not accessing or reading notes. One patient reported being too nervous, one forgot about OpenNotes, and one was unable to find the notes. We also collected free response data from both patients and clinicians to provide a more personal and descriptive narrative. Select responses of patients are included below in Table 3 with a focus on perceived benefits as well as perceived risks, especially around security of data. Patients’ comments were diverse but focused on both perceived benefits as well as risks. While information sharing was frequently brought up as a positive aspect of OpenNotes, concerns that health data may be hacked or stolen was brought up by many patients. CLINICIAN DATA The mental health clinicians’ experiences with OpenNotes are provided below in Table 4. The 12 mental health clinicians were asked if their note writing changed because of OpenNotes. Most clinicians agreed that two clinical situations contributed to them writing less in the notes, specifically for patients with trauma histories and patients with psychotic symptoms. Other factors such as suicidal ideation, substance abuse, risk assessment, medication side effects, patient resiliency, patient appearance, diagnosis, and illegal behavior did not lead to consistent changes in the note. Six of the seven clinicians who were aware that patients read their notes reported that those patients did not express being offended by what they read. Most of the study clinicians (nine or more) reported that severity of illness, length of time in treatment, and psychiatric diagnosis were critical variables considered in their patient selection for the pilot. Substance abuse and the age of the patient were viewed as less important criteria, with only three and one clinician noting those respectively. Most the clinicians (nine or more) reported the tendency to include depressive and anxiety disorders and exclude psychotic disorders. After 20 months of experience with the pilot, 11 of the 12 clinicians believed that patient inclusion in OpenNotes should only occur with careful consideration by the clinician. They felt strongly that patients be selected on a case by case basis, with a mean of 8.4 on a 110 rating scale of importance and range of 4-10. Free responses from clinicians illustrate their personal perspectives on the process of OpenNotes. Table 5 includes this data organized around theme of favorable versus concerned responses as well as those advocating for clinician selection of patients. Like patients in this study, clinicians also had views on the perceived 6
benefits as well as risks of OpenNotes. Benefits focused on enhanced communication with patients, while concerns focused on the potential for notes to offend patients and lead to harm if offered to patients not deemed appropriate for OpenNotes. Discussion Our study provides data on the feasibility and acceptability of allowing select psychiatry patients to read their mental health in the setting of a busy academic medical centers outpatient psychiatry department. Study results indicate the selected patients found OpenNotes in psychiatry to be useful and clinicians report that they did not experience adverse consequences due to sharing their notes. From a patient perspective, OpenNotes is valued. Patients noted many reasons for accessing their notes, including curiosity, desire to verify accuracy of information, reinforce decisions about the treatment plan, and reassurance. Some patients chose to share their notes with others, most often a family member. Interestingly, only 16% (n=7) patients told their mental health provider that they had read their notes, suggesting that either patients found the information redundant, had some hesitation in discussing their notes directly, or there wasn’t enough time in brief psychopharmacology based appointments. While our study does not suggest why there were such low rates of discussion with their mental health clinician about the notes, it seems being “offended” was not a significant reason as only one patient in the entire study reported that after reading their note. The fact that 98% (n=44) of patients indicated they want continued access to their mental health notes suggests that overall those who accessed their notes found utility in doing so. It is also interesting to note that while patients did not report significant privacy concerns with OpenNotes, there was a strong general sentiment that health information online is at risk of being stolen or hacked. Although our survey was not designed to explore these privacy concerns in more detail, the general theme from the free response comments indicated that some patients are skeptical that the medical system can keep their health data secure and that any digital data is vulnerable. Recent data from the federal government indicates that the number of electronic medical record hacking incidents continues to rise each year [9] and highlights the importance of security for all health information technology projects, including but not limited to OpenNotes. From a mental health clinician perspective, OpenNotes did not increase clinical burden or lead to adverse patient outcomes. Of the twelve mental health clinicians who participated in the study, none reported that OpenNotes made their visits take longer or that they had to spend more time outside of visits addressing patient questions. However, some clinicians did change the way they wrote notes with three changing the tone, eight omitting sensitive details, and four using fewer medical terms. While our study was not designed to investigate the impact of such changes to mental health notes, our results do raise the important question of the degree to which mental health OpenNotes are different from non-OpenNotes versions, and in 7
what ways. We are planning a natural language processing study to quantify the difference in notes and better understand what these changes may mean for patient care. Free text comments from clinicians also endorsed their strong belief that it is important they be able to select patients for OpenNotes. Clinicians reported high levels of concern about including patients with psychotic disorders and personality disorders in OpenNotes and noted they would be concerned about including them in future iterations of OpenNotes. These results must be understood in the context of how patients in this study were selected and the nature of those selected patients. The fact that clinicians were able to select which patients to include, as well as exclude, leaves open the possibility that patients who may have potentially been at higher risk of harm from OpenNotes were excluded. For those patients included in this study, it is possible that the strength of the therapeutic relationship and the clinical stability of patients were protective factors against any harm or adverse events. The patients in this study were largely white (90%), well educated (71% with 4 year college degree or higher) and reported high self-confidence in making the most of their mental health visits (69%). The majority of patients in this study were also seeing clinicians for medication related visits and not primarily psychotherapy. Going forward it will be necessary to study the impact and experience of OpenNotes in more broad, diverse, and higher risk patient populations. It is possible results may be less positive in a more diverse or high risk population. Still, the results of this study offer an initial effort and starting point that future studies can build from. Another interesting finding in our study is in regard to the level of engagement psychiatric outpatients have with OpenNotes. Of the 568 patients who were invited to read their psychiatric notes, 30% (n=171) accessed at least one note. Fifty-two patients agreed to partake in the survey and of those 52, 45 (86%) reported reading at least one note. While we do not have data on why 70% of patients invited into this study chose not to read a note, capturing the experience of why they chose not to read their notes will be an important topic for future studies. While our study was not designed to explore psychiatric healthcare outcomes of OpenNotes, it does suggest that for selected patients potential benefits may occur. OpenNotes for patients may lead to remembering treatment plans and enhance compliance with medications. These results are promising toward opening up barriers to treatment as well as decreasing costs associated with the intervention. From a policy perspective, these results suggest critical data for making informed decisions at both the clinic and hospital leadership levels. OpenNotes for these selected psychiatry patients did not add to clinician burden, did not lead to adverse outcomes and was favorably received.
8
Conclusion While our study raises more questions than it answers about impact of OpenNotes in psychiatry, it does demonstrate the powerful potential of OpenNotes for select psychiatric outpatients and the possibility of enhanced mental health treatment. Through broader and more diverse clinical research, the field can continue to bring data to bear on Roth’s question, is “patient access to records: tonic or toxin” and provide the necessary data to begin to inform policy decision making around OpenNotes in psychiatry.
Funding: None Competing interests: None declared Ethical approval: Obtained from BIDMC IRB
9
References
1. 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):461-70. 2 Roth LH, Wolford J, Meisel A. Patient access to records: tonic or toxin?. Am J Psychiatry. 1980;137(5):592-6. 3. Stein EJ, Furedy RL, Simonton MJ, Neuffer CH. Patient access to medical records on a psychiatric inpatient unit. Am J Psychiatry. 1979;136(3):327-9. 4. Sergeant H. Should psychiatric patients be granted access to their hospital records?. Lancet. 1986;2(8519):1322-5. 5. Crichton P, Douzenis A, Leggatt C, Hughes T, Lewis S. Are psychiatric case-notes offensive?. Psychiatr Bull R Coll Psychiatr. 1992;16(11):675-7. 6. Bernadt M, Gunning L, Quenstedt M. Patients' access to their own psychiatric records. BMJ. 1991;303(6808):967. 7. Fors M, McWilliam N. Collaborative Reading of Medical Records in Psychotherapy: A Feminist Psychanalytical Proposal about Narrative and Empowerment. Psychanalytic Psychology. 2015:33(1) 35-57 8. Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. 9. Breaches of Unsecured Protected Health Information. HealthIT.gov. Accessed May 10th, 2016. Available at: http://dashboard.healthit.gov/quickstats/pages/breaches-protected-healthinformation.php
10
Table 1: Patient Characteristics Overall n(%)
Patients who read notes n(%)
52 (100)
45 (86.5)
1 (2.1) 3 (6.3) 1 (2.1) 43 (89.6)
1 (2.4) 2 (4.9) 0 (0) 38 (92.7)
1 (2.1) 2 (4.2) 11 (22.9) 14 (29.2) 20 (41.7)
1 (2.4) 1 (2.4) 10 (24.4) 12 (29.3) 17 (41.5)
5 (10.4) 11 (22.9) 24 (50.0) 7 (14.6) 1 (2.1)
5 (12.2) 11 (26.8) 20 (48.8) 4 (9.8) 1 (2.4)
33 (68.8) 11 (22.9) 4 (8.3)
30 (73.2) 9 (22.0) 2 (4.9)
12(100)
n/a
Patient Characteristics Total Race/Ethnicity Asian Black Hispanic/Latino White Highest Level of Education Elementary High school graduate Some college or 2 year degree 4 Year college graduate Masters or doctoral Self-reported Overall Health Excellent Very good Good Fair Poor Confidence in making the most of mental health visits (1-10 Scale): 9-10 6-8 ≤5 Provider Characteristics Total
Clinical Role Mostly psychopharmacology management 8(66.7) n/a Mostly psychotherapy 3(25) n/a Mostly psychiatric consultations 1(8.3) n/a NOTE: Frequencies for patient demographics (race, education, self-reported health and confidence in mental health visits) excludes 4 patients with missing data.
11
Table 2: Patient Specific Experience with OpenNotes Item Looked at mental health provider notes on PatientSite:
Patients n(%) 45(86.5)
Why did you read your visit notes? (Top 5 Reasons)* I was curious I wanted to know about my health I wanted to know what my provider was thinking I wanted to be sure I understood what the provider said I have a right to see what is in my medical record
29(64.4) 29(64.4) 26(57.8) 22(48.9) 21(46.7)
Showed or discussed visit notes with other people:* Discussed with provider that they had read his/her note(s):*
9(20) 7(15.6)
Contacted provider outside of appointment time about something in their note:*
3(6.7)
Benefits of Open Notes (Somewhat Agree and Agree) Understand my mental health better because I read my notes Remember the plan for my mental health better because I read my notes I do better taking my psychiatry medications because I read my notes I better understand potential side effects of my medications I feel more in control of my mental health care because I read my notes I am better prepared for visits because I read my notes Risk of Open Notes (Agree and Strong Agree) I worry more because I read my mental health notes I felt offended when I read my mental health notes I was concerned about my privacy Would like to continue to be able to see my mental health notes online:* *Among patients who read a note †Among patients who shared a visit note
31(68.8) 31(68.8) 13 (28.8) 16 (35.5) 37 (82.2) 16 (35.5) 25(55.5) 2 (4.44) 4(8.88) 8 (17.7)
44(97.8)
12
Table 3: Select Patient Free Responses on Perceived Benefits and Concerns with OpenNotes BENEFITS I like to be fully engaged with my provider, and looking at the notes helps me to make sure that she and I are on the same page Seeing my provider’s summary of a visit lets me know what they thought happened, which is not always the same as what I thought happened or what was communicated at the time. If there’s a conflict I want to know so I can decide whether it needs to be addressed or not The notes were an accurate description of the visit, and presumably of my condition. It was very comforting to have my recollections and understandings confirmed It is helpful to understand the visit from my providers point of view CONCERNS Hacking is always a concern, but I feel that BIDMC does as much as any organization to prevent that from happening I just hope that patient site is very very secure Data breaches happen all the time I am concerned because my other providers may rely on these reports. In my experience, providers are more likely to rely on a colleague’s judgment than a patients input I only want my visits with my mental health care provider to be between me and the provider. I see no reason for them to be for everyone to read. ….If I am having a side effect from the medication then I would feel differently about the sharing of notes. Neither (good or bad). They were pretty much a recap of my appointment
13
Table 4: Clinician Specific Experience with Open Notes * = Among providers who thought patients read notes (n=7) Item Specific Response Providers n(%) Of your patients who had access to your 1-25% 7 (58.3) visit notes online, how many do you estimate read them? Cannot Estimate 5 (41.7) 0(0) My visits took significantly longer.* Spent significantly more time addressing 0(0) patient questions outside of visits.* Knowing patients could read my notes, I 4 (33.3) was less candid in my documentation. Knowing patients could read my notes, I 7 (58.3) was less candid in my documentation. The severity of my patients’ illness 9(75%) was a factor in selecting them to partake in this study The length in time of treatment was a 9(75%) factor in selecting them to partake in this study The diagnosis of my patients’ illness Anxiety Disorders 0(0) was a factor in excluding them from Depressive Disorders 0(0) partake in this study Substance Disorders 1(8) Eating Disorders 1(8) Bipolar Disorder 2 (17) Cognitive Disorders 3(25) Personality Disorders 4 (33.3) Psychotic Disorders 7 (58.3)
14
Table 5: Select Clinician Free Responses on Perceived Benefits and Concerns with OpenNotes BENEFITS In most situations this has resulted in returning to the issue and in some cases deepening the discussion. In other situations damage control was needed. In spite of that I overall believe open notes to be an improvement I think it helped me to work on communicating my thinking and approach in a more succinct and clear way Lead to one interesting discussion with patient regarding their substance abuse It was wonderful when a few patients felt they were perceived correctly by their therapist CONCERNS Specific discussion with the therapist which could have been helpful for the medical team to have access to had to be dropped because of patient reading notes and being paranoid about communications I am less likely to use terms that are clinically accurate but may be read as pejorative, eg “paranoia”, “narcissistic”, “psychotic” I prefer discussion during office time with the patient I believe some patients will drop out of treatment as of result of reading their notes. It is always a balance between including enough to make the clinical situation and background clear vs making the patient feel too exposed Concern about situations where my assessment might read as stigmatizing Keep it up to the clinicians to decide who to exclude Overall I think it is either benign or helpful, but I would still want to have the ability to exclude certain patients Keep it up to the clinicians to decide who to exclude Although active participation in mental health treatment might be an ambitious goal to pursue, the open notes level of involvement might not be manageable for our most vulnerable patients Overall I think it is either benign or helpful, but I would still want to have the ability to exclude certain patients Have not been aware of any particular benefit by it. Really have not had feedback from patients about it.
15
Highlights OpenNotes is feasible in an outpatient psychiatry clinic. Our pilot study found no evidence of harm caused by sharing clinical notes. Psychiatrists remain concerned about the effects of sharing notes with certain patients.
16
PII: DOI: Reference:
S2211-8837(17)30043-6 http://dx.doi.org/10.1016/j.hlpt.2017.06.003 HLPT237
To appear in: Health Policy and Technology Cite this article as: Pamela Peck, John Torous, Meghan Shanahan, Alan Fossa and William Greenberg, Patient Access to Electronic Psychiatric Records: A Pilot Study, Health Policy and Technology, http://dx.doi.org/10.1016/j.hlpt.2017.06.003 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting galley proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Patient Access to Electronic Psychiatric Records: A Pilot Study Pamela Peck1, Psy.D., John Torous1,2, M.D., Meghan Shanahan3, M.S., N.P., Alan Fossa4, William Greenberg, M.D1.
1. Department of Psychiatry, Beth Israel Deaconess Medical Center, Boston, MA 2. Division of Clinical Informatics, Beth Israel Deaconess Medical Center, Boston, MA 3. Veterans Affairs, Boston, MA 4. Beth Israel Deaconess Medical Center, Boston, MA Corresponding Author: Pamela Peck, Psy.D. Department of Psychiatry 330 Brookline Avenue Boston, Massachusetts 02215 Phone: (617) 667-0651 Fax: (617)-667-4735 Disclosures and acknowledgments: The authors would like to thank and acknowledge Janice Walker M.B.A and Suzanne Leveille, Ph.D. R.N. for their contributions to this study and paper. None of the authors report any potential conflicts of interest. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. Key Words: OpenNotes, Technology, Medical Records, Psychiatry
1
Abstract Background: OpenNotes, a national movement offering patients access to their doctor’s notes, lies at the intersection of health policy and health technology. Despite interest in OpenNotes, little is known about how such may be implemented in psychiatry departments using electronic medical records. This study reports on the first pilot project to examine the experience of patients and clinicians when open access to psychiatric records was provided within an ongoing treatment relationship. Methods: Fifteen clinicians in an outpatient psychiatry clinic in a Boston medical center agreed to participate in the study and 52 of their patients to participate. Those patients had the opportunity to read their progress notes through a patient site linked to an electronic medical record. Patients and clinicians were surveyed 20 months later. Results: Results from this select group suggest that open access to notes was perceived as helpful to patients and did not negatively impact the patients or the treatment relationship. In addition, our experience was that mental health clinicians could be engaged in the process of OpenNotes. Conclusion: This is the first study to implement and assess the impact of patients’ access to psychiatric records in an outpatient setting. Although many questions remain to be studied and a more diverse sample is needed for future research, the potential impact to enhance mental health treatment and the patient-clinician relationship is suggested for selected psychiatric patients. Policy around providing psychiatry patients access to their notes can be informed by reactions of both clinicians and patients.
2
Introduction OpenNotes is a national initiative that allows patients to read the visit notes their clinicians write about them. Sharing notes in this manner is a relatively new phenomenon in a medical world that has traditionally restricted access to documentation. While research on OpenNotes for primary care patients has been encouraging1, there is a lack of data on OpenNotes in psychiatry. The OpenNotes project was developed at the Beth Israel Deaconess Medical Center in Boston and included two other academic medical centers. It was the first study to specifically look at patient and provider experience sharing notes in a primary care setting. Preliminary clinical benefits were demonstrated for patients and the treatment relationship. Providers’ initial concerns that access to notes would create worry or confusion in their patients and that it would be a time burden were mostly unfounded [1]. However, implementation of open access for patients with mental health and/or substance abuse problems has been controversial and approached with caution. This was evident in the initial OpenNotes study where one of the three academic medical centers excluded patients with mental health related diagnoses while the other two centers permitted physicians to exclude individual patients from access. It is unknown how many patients were excluded with mental health diagnosis in this original OpenNotes or how many partook. Concerns with access to medical records for psychiatric patients are not new and are best captured in the title of a 1980 article from The American Journal of Psychiatry, ‘Patient Access to Records: Tonic or Toxin’ [2]. Some of the earliest data on the topic was reported in a 1979 study where patients were offered access to their records while on an inpatient psychiatric unit [3]. The results were generally supportive of open access, yet mixed. Most patients described being more active in their treatment, a better understanding of their problems and were in favor of access. On the other hand, half of the patients reported feeling upset in reading their notes. From a staff perspective, a large majority found patients’ access to records to be a useful therapeutic tool and supported continued access. Over half acknowledged that they altered documentation patterns to minimize patients’ upset and a quarter reported some harm occurred to one patient. Although these results are over 35 years old, they provide the most formative data on patient access to records for psychiatry and indicate both potential benefits and risks in psychiatric patients’ access to notes. The focus of later studies was identification of areas for patient harm. Puzzling psychiatric terminology, alarming comments, potentially offensive statements, personality characterization, and sensitive information from and about others were noted [4,5]. Potential factors contributing to patient “upset” in response to reading notes were suggested as younger age, unmarried status, lower social class, and suffering from non-affective psychosis [6]. 3
Legislation, political forces, and technological advances brought further attention to this issue. The Access to Health Records Act, which became law in November 1991, allowed patients to request health records and spurred further interest in understanding the impact of access to psychiatric notes. The advent of the Internet and the concomitant rise of online medical records have redefined the nature of access to records with patients’ notes now a single click away. The social context has also changed. There have been significant political shifts in our society as power structures have been questioned, relationships of mutuality and collaboration emphasized, and transparency encouraged. At this juncture, several concerns of mental health clinicians have been identified. The sensitive nature of mental health and substance abuse treatment as well as the acute and potentially reactive states inherent in some psychiatric illnesses contribute to clinicians’ doubts about the helpfulness of open access and highlight the potential for harm. Also, electronic medical records are now written for several constituencies, the patient’s physicians from other specialties who share the record, the insurance company to verify coding and service for reimbursement, and in the case of busy clinics, for the mental health clinician to note important facts to remember. In the current climate of fast paced psychiatric clinics there are more demands on clinicians’ out of session time for communications and 3rd party payers. Psychiatric providers are worried that open access to notes for patients would impact their work flow, lengthen brief clinical visits, require more time writing notes, and add time to respond to patient concerns outside of visits. The importance of studying OpenNotes in psychiatry has become a topic of increasing interest [8,9]. There is a lack of outcomes data on the impact of sharing these records. The Veterans Administration has published on their experience with OpenNotes in one mental health setting. The clinicians were ambivalent, although many of those surveyed had not used OpenNotes with their patient [9]. In order to begin to understand the impact of OpenNotes on psychiatric patients and clinicians, we conducted an exploratory pilot study of implementing OpenNotes. Methods In March 2014 the Psychiatry Ambulatory Service (P.A.S) elected to participate in the OpenNotes hospital-wide implementation at the Beth Israel Deaconess Center in Boston. Given that there was no previous systematic study of the use of OpenNotes in a mental health setting, the P.A.S. group of clinicians volunteered to participate in a pilot project with the goal of learning about the impact of open notes on patients and their treatment. After several discussions as a group, 100% of the staff (n=15) opted to participate in the pilot, initially selecting a minimum of 10% from their active ongoing caseload. The staff included 12 attending psychiatrists, two licensed social workers and one nurse practitioner. Providers were given freedom to include patients based on their clinical assessment. In addition, individual notes in the 4
system could be marked as “monitored” if the clinician determined that a specific visit should not be available for viewing. Six months into the pilot, most of the clinicians expanded their pilot list to include more active patients. A total of 568 patients were selected by their clinicians. The physicians and nurse practitioner met with patients primarily for psychopharmacological treatment, in 15-20 minute appointments, every few months or as clinically indicated. The social workers involved use focal intermittent therapy, meeting for 45 minutes, once or twice per month. At the inception of the pilot, the clinicians were provided guidance in staff meetings, reviewing a sample script of how to introduce the pilot to patients and a document addressing providers’ frequently asked questions. Some pilot patients were informed by their clinicians in a routine follow up appointment. All patients were selected based on the judgment of their clinician and those selected were mailed an introductory letter about the OpenNotes pilot from the director of the clinic. The letter included a brief description of the pilot and a handout with responses to patients’ frequently asked questions. All patients selected had personal access to the portal. Two post-intervention surveys, one for participating clinicians and one for patients, were developed for the pilot, based on the prior research, meetings with the OpenNotes team involved in the original study, and conversations with participating clinicians. Questions from the original OpenNotes protocol were modified, altering the language of the questions to be clear that we were asking about interactions specific to mental health care. With the approval of the I.R.B. at our medical center, the surveys were administered 20 months following the initiation of the pilot. Participating clinicians were invited by email to complete the provider post-intervention questionnaire, via a website called SurveyGizmo, and received three email reminders. Participating patients were invited to complete the patient post-intervention survey through PatientSite, the medical center’s secure portal, and received 2 follow up reminders. Surveys were linked to patients only via study identifiers and not name or other personal information.
Results Over the course of the pilot, 568 patients had access to their mental health notes through the patient portal. Of these, 171 patients read at least one mental health note. A total of 52 patients completed the post-intervention survey to report on their experience with Open Notes and of those 52, 45 had read their notes. Of these 45 patients, 92.7% identified as Caucasian and 7.6% as non-Caucasian. Although fifteen clinicians participated in the study, twelve mental health providers completed the study and filled out the questionnaire. Details on the patients and mental health clinicians in the study are provided below in Table 1. 5
PATIENT DATA Patient experiences with OpenNotes are reported below in Table 2. Only nine patients reported sharing their notes with others and the most frequent sharing was with another family member. Twelve patients who never read their notes completed the survey, although . There was no consistent explanation for not accessing or reading notes. One patient reported being too nervous, one forgot about OpenNotes, and one was unable to find the notes. We also collected free response data from both patients and clinicians to provide a more personal and descriptive narrative. Select responses of patients are included below in Table 3 with a focus on perceived benefits as well as perceived risks, especially around security of data. Patients’ comments were diverse but focused on both perceived benefits as well as risks. While information sharing was frequently brought up as a positive aspect of OpenNotes, concerns that health data may be hacked or stolen was brought up by many patients. CLINICIAN DATA The mental health clinicians’ experiences with OpenNotes are provided below in Table 4. The 12 mental health clinicians were asked if their note writing changed because of OpenNotes. Most clinicians agreed that two clinical situations contributed to them writing less in the notes, specifically for patients with trauma histories and patients with psychotic symptoms. Other factors such as suicidal ideation, substance abuse, risk assessment, medication side effects, patient resiliency, patient appearance, diagnosis, and illegal behavior did not lead to consistent changes in the note. Six of the seven clinicians who were aware that patients read their notes reported that those patients did not express being offended by what they read. Most of the study clinicians (nine or more) reported that severity of illness, length of time in treatment, and psychiatric diagnosis were critical variables considered in their patient selection for the pilot. Substance abuse and the age of the patient were viewed as less important criteria, with only three and one clinician noting those respectively. Most the clinicians (nine or more) reported the tendency to include depressive and anxiety disorders and exclude psychotic disorders. After 20 months of experience with the pilot, 11 of the 12 clinicians believed that patient inclusion in OpenNotes should only occur with careful consideration by the clinician. They felt strongly that patients be selected on a case by case basis, with a mean of 8.4 on a 110 rating scale of importance and range of 4-10. Free responses from clinicians illustrate their personal perspectives on the process of OpenNotes. Table 5 includes this data organized around theme of favorable versus concerned responses as well as those advocating for clinician selection of patients. Like patients in this study, clinicians also had views on the perceived 6
benefits as well as risks of OpenNotes. Benefits focused on enhanced communication with patients, while concerns focused on the potential for notes to offend patients and lead to harm if offered to patients not deemed appropriate for OpenNotes. Discussion Our study provides data on the feasibility and acceptability of allowing select psychiatry patients to read their mental health in the setting of a busy academic medical centers outpatient psychiatry department. Study results indicate the selected patients found OpenNotes in psychiatry to be useful and clinicians report that they did not experience adverse consequences due to sharing their notes. From a patient perspective, OpenNotes is valued. Patients noted many reasons for accessing their notes, including curiosity, desire to verify accuracy of information, reinforce decisions about the treatment plan, and reassurance. Some patients chose to share their notes with others, most often a family member. Interestingly, only 16% (n=7) patients told their mental health provider that they had read their notes, suggesting that either patients found the information redundant, had some hesitation in discussing their notes directly, or there wasn’t enough time in brief psychopharmacology based appointments. While our study does not suggest why there were such low rates of discussion with their mental health clinician about the notes, it seems being “offended” was not a significant reason as only one patient in the entire study reported that after reading their note. The fact that 98% (n=44) of patients indicated they want continued access to their mental health notes suggests that overall those who accessed their notes found utility in doing so. It is also interesting to note that while patients did not report significant privacy concerns with OpenNotes, there was a strong general sentiment that health information online is at risk of being stolen or hacked. Although our survey was not designed to explore these privacy concerns in more detail, the general theme from the free response comments indicated that some patients are skeptical that the medical system can keep their health data secure and that any digital data is vulnerable. Recent data from the federal government indicates that the number of electronic medical record hacking incidents continues to rise each year [9] and highlights the importance of security for all health information technology projects, including but not limited to OpenNotes. From a mental health clinician perspective, OpenNotes did not increase clinical burden or lead to adverse patient outcomes. Of the twelve mental health clinicians who participated in the study, none reported that OpenNotes made their visits take longer or that they had to spend more time outside of visits addressing patient questions. However, some clinicians did change the way they wrote notes with three changing the tone, eight omitting sensitive details, and four using fewer medical terms. While our study was not designed to investigate the impact of such changes to mental health notes, our results do raise the important question of the degree to which mental health OpenNotes are different from non-OpenNotes versions, and in 7
what ways. We are planning a natural language processing study to quantify the difference in notes and better understand what these changes may mean for patient care. Free text comments from clinicians also endorsed their strong belief that it is important they be able to select patients for OpenNotes. Clinicians reported high levels of concern about including patients with psychotic disorders and personality disorders in OpenNotes and noted they would be concerned about including them in future iterations of OpenNotes. These results must be understood in the context of how patients in this study were selected and the nature of those selected patients. The fact that clinicians were able to select which patients to include, as well as exclude, leaves open the possibility that patients who may have potentially been at higher risk of harm from OpenNotes were excluded. For those patients included in this study, it is possible that the strength of the therapeutic relationship and the clinical stability of patients were protective factors against any harm or adverse events. The patients in this study were largely white (90%), well educated (71% with 4 year college degree or higher) and reported high self-confidence in making the most of their mental health visits (69%). The majority of patients in this study were also seeing clinicians for medication related visits and not primarily psychotherapy. Going forward it will be necessary to study the impact and experience of OpenNotes in more broad, diverse, and higher risk patient populations. It is possible results may be less positive in a more diverse or high risk population. Still, the results of this study offer an initial effort and starting point that future studies can build from. Another interesting finding in our study is in regard to the level of engagement psychiatric outpatients have with OpenNotes. Of the 568 patients who were invited to read their psychiatric notes, 30% (n=171) accessed at least one note. Fifty-two patients agreed to partake in the survey and of those 52, 45 (86%) reported reading at least one note. While we do not have data on why 70% of patients invited into this study chose not to read a note, capturing the experience of why they chose not to read their notes will be an important topic for future studies. While our study was not designed to explore psychiatric healthcare outcomes of OpenNotes, it does suggest that for selected patients potential benefits may occur. OpenNotes for patients may lead to remembering treatment plans and enhance compliance with medications. These results are promising toward opening up barriers to treatment as well as decreasing costs associated with the intervention. From a policy perspective, these results suggest critical data for making informed decisions at both the clinic and hospital leadership levels. OpenNotes for these selected psychiatry patients did not add to clinician burden, did not lead to adverse outcomes and was favorably received.
8
Conclusion While our study raises more questions than it answers about impact of OpenNotes in psychiatry, it does demonstrate the powerful potential of OpenNotes for select psychiatric outpatients and the possibility of enhanced mental health treatment. Through broader and more diverse clinical research, the field can continue to bring data to bear on Roth’s question, is “patient access to records: tonic or toxin” and provide the necessary data to begin to inform policy decision making around OpenNotes in psychiatry.
Funding: None Competing interests: None declared Ethical approval: Obtained from BIDMC IRB
9
References
1. 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):461-70. 2 Roth LH, Wolford J, Meisel A. Patient access to records: tonic or toxin?. Am J Psychiatry. 1980;137(5):592-6. 3. Stein EJ, Furedy RL, Simonton MJ, Neuffer CH. Patient access to medical records on a psychiatric inpatient unit. Am J Psychiatry. 1979;136(3):327-9. 4. Sergeant H. Should psychiatric patients be granted access to their hospital records?. Lancet. 1986;2(8519):1322-5. 5. Crichton P, Douzenis A, Leggatt C, Hughes T, Lewis S. Are psychiatric case-notes offensive?. Psychiatr Bull R Coll Psychiatr. 1992;16(11):675-7. 6. Bernadt M, Gunning L, Quenstedt M. Patients' access to their own psychiatric records. BMJ. 1991;303(6808):967. 7. Fors M, McWilliam N. Collaborative Reading of Medical Records in Psychotherapy: A Feminist Psychanalytical Proposal about Narrative and Empowerment. Psychanalytic Psychology. 2015:33(1) 35-57 8. Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. VA mental health clinician experiences and attitudes toward OpenNotes. Gen Hosp Psychiatry. 2016;38:89-93. 9. Breaches of Unsecured Protected Health Information. HealthIT.gov. Accessed May 10th, 2016. Available at: http://dashboard.healthit.gov/quickstats/pages/breaches-protected-healthinformation.php
10
Table 1: Patient Characteristics Overall n(%)
Patients who read notes n(%)
52 (100)
45 (86.5)
1 (2.1) 3 (6.3) 1 (2.1) 43 (89.6)
1 (2.4) 2 (4.9) 0 (0) 38 (92.7)
1 (2.1) 2 (4.2) 11 (22.9) 14 (29.2) 20 (41.7)
1 (2.4) 1 (2.4) 10 (24.4) 12 (29.3) 17 (41.5)
5 (10.4) 11 (22.9) 24 (50.0) 7 (14.6) 1 (2.1)
5 (12.2) 11 (26.8) 20 (48.8) 4 (9.8) 1 (2.4)
33 (68.8) 11 (22.9) 4 (8.3)
30 (73.2) 9 (22.0) 2 (4.9)
12(100)
n/a
Patient Characteristics Total Race/Ethnicity Asian Black Hispanic/Latino White Highest Level of Education Elementary High school graduate Some college or 2 year degree 4 Year college graduate Masters or doctoral Self-reported Overall Health Excellent Very good Good Fair Poor Confidence in making the most of mental health visits (1-10 Scale): 9-10 6-8 ≤5 Provider Characteristics Total
Clinical Role Mostly psychopharmacology management 8(66.7) n/a Mostly psychotherapy 3(25) n/a Mostly psychiatric consultations 1(8.3) n/a NOTE: Frequencies for patient demographics (race, education, self-reported health and confidence in mental health visits) excludes 4 patients with missing data.
11
Table 2: Patient Specific Experience with OpenNotes Item Looked at mental health provider notes on PatientSite:
Patients n(%) 45(86.5)
Why did you read your visit notes? (Top 5 Reasons)* I was curious I wanted to know about my health I wanted to know what my provider was thinking I wanted to be sure I understood what the provider said I have a right to see what is in my medical record
29(64.4) 29(64.4) 26(57.8) 22(48.9) 21(46.7)
Showed or discussed visit notes with other people:* Discussed with provider that they had read his/her note(s):*
9(20) 7(15.6)
Contacted provider outside of appointment time about something in their note:*
3(6.7)
Benefits of Open Notes (Somewhat Agree and Agree) Understand my mental health better because I read my notes Remember the plan for my mental health better because I read my notes I do better taking my psychiatry medications because I read my notes I better understand potential side effects of my medications I feel more in control of my mental health care because I read my notes I am better prepared for visits because I read my notes Risk of Open Notes (Agree and Strong Agree) I worry more because I read my mental health notes I felt offended when I read my mental health notes I was concerned about my privacy Would like to continue to be able to see my mental health notes online:* *Among patients who read a note †Among patients who shared a visit note
31(68.8) 31(68.8) 13 (28.8) 16 (35.5) 37 (82.2) 16 (35.5) 25(55.5) 2 (4.44) 4(8.88) 8 (17.7)
44(97.8)
12
Table 3: Select Patient Free Responses on Perceived Benefits and Concerns with OpenNotes BENEFITS I like to be fully engaged with my provider, and looking at the notes helps me to make sure that she and I are on the same page Seeing my provider’s summary of a visit lets me know what they thought happened, which is not always the same as what I thought happened or what was communicated at the time. If there’s a conflict I want to know so I can decide whether it needs to be addressed or not The notes were an accurate description of the visit, and presumably of my condition. It was very comforting to have my recollections and understandings confirmed It is helpful to understand the visit from my providers point of view CONCERNS Hacking is always a concern, but I feel that BIDMC does as much as any organization to prevent that from happening I just hope that patient site is very very secure Data breaches happen all the time I am concerned because my other providers may rely on these reports. In my experience, providers are more likely to rely on a colleague’s judgment than a patients input I only want my visits with my mental health care provider to be between me and the provider. I see no reason for them to be for everyone to read. ….If I am having a side effect from the medication then I would feel differently about the sharing of notes. Neither (good or bad). They were pretty much a recap of my appointment
13
Table 4: Clinician Specific Experience with Open Notes * = Among providers who thought patients read notes (n=7) Item Specific Response Providers n(%) Of your patients who had access to your 1-25% 7 (58.3) visit notes online, how many do you estimate read them? Cannot Estimate 5 (41.7) 0(0) My visits took significantly longer.* Spent significantly more time addressing 0(0) patient questions outside of visits.* Knowing patients could read my notes, I 4 (33.3) was less candid in my documentation. Knowing patients could read my notes, I 7 (58.3) was less candid in my documentation. The severity of my patients’ illness 9(75%) was a factor in selecting them to partake in this study The length in time of treatment was a 9(75%) factor in selecting them to partake in this study The diagnosis of my patients’ illness Anxiety Disorders 0(0) was a factor in excluding them from Depressive Disorders 0(0) partake in this study Substance Disorders 1(8) Eating Disorders 1(8) Bipolar Disorder 2 (17) Cognitive Disorders 3(25) Personality Disorders 4 (33.3) Psychotic Disorders 7 (58.3)
14
Table 5: Select Clinician Free Responses on Perceived Benefits and Concerns with OpenNotes BENEFITS In most situations this has resulted in returning to the issue and in some cases deepening the discussion. In other situations damage control was needed. In spite of that I overall believe open notes to be an improvement I think it helped me to work on communicating my thinking and approach in a more succinct and clear way Lead to one interesting discussion with patient regarding their substance abuse It was wonderful when a few patients felt they were perceived correctly by their therapist CONCERNS Specific discussion with the therapist which could have been helpful for the medical team to have access to had to be dropped because of patient reading notes and being paranoid about communications I am less likely to use terms that are clinically accurate but may be read as pejorative, eg “paranoia”, “narcissistic”, “psychotic” I prefer discussion during office time with the patient I believe some patients will drop out of treatment as of result of reading their notes. It is always a balance between including enough to make the clinical situation and background clear vs making the patient feel too exposed Concern about situations where my assessment might read as stigmatizing Keep it up to the clinicians to decide who to exclude Overall I think it is either benign or helpful, but I would still want to have the ability to exclude certain patients Keep it up to the clinicians to decide who to exclude Although active participation in mental health treatment might be an ambitious goal to pursue, the open notes level of involvement might not be manageable for our most vulnerable patients Overall I think it is either benign or helpful, but I would still want to have the ability to exclude certain patients Have not been aware of any particular benefit by it. Really have not had feedback from patients about it.
15
Highlights OpenNotes is feasible in an outpatient psychiatry clinic. Our pilot study found no evidence of harm caused by sharing clinical notes. Psychiatrists remain concerned about the effects of sharing notes with certain patients.
16