Issues in Mental Health Nursing, 35:495–496, 2014 Copyright © 2014 Informa Healthcare USA, Inc. ISSN: 0161-2840 print / 1096-4673 online DOI: 10.3109/01612840.2014.918472
FROM THE EDITOR
Sharing Records with Patients with Mental Illness Sandra P. Thomas, PhD, RN, FAAN, Editor
An editorial (Kahn, Bell, Walker, & Delbanco, 2014) in the Journal of the American Medical Association (JAMA) piqued my interest and sent me on a search of other medical and nursing literature. The topic? Showing patients with mental illness their records. The authors argue that allowing patients to read what their doctors write about them will confer a number of benefits, while posing only a few risks. Kahn et al. (2014, p. 1291) contend that By writing notes useful to both patients and ourselves and then inviting them to read what we write, we may help patients address their mental health issues more actively and reduce the stigma they experience. [italics in original]
Permitting patients to read their records—and even modify them, in some cases—is entirely consistent with current philosophies of consumer-centric care (Detmer, Bloomrosen, Raymond, & Tang, 2008) and person-centered care (Barker, 2001). The idea is not new, as evidenced by a flurry of articles published in the 1980s and 1990s (e.g., Jha, Bernadt, Brown, Sawicka, & Stein, 1998; Pool & Andresen, 1984–1985; Roth, Wolford, & Meisel, 1980). But only now, in the twenty-first century, with the widespread adoption of electronic records, Internet access, and portal use, is the practice of record-sharing more feasible and more likely to receive acceptance. Recent research indicated a high degree of satisfaction, by both doctors and patients, with a year-long experiment in which patients could review (online) the notes written by their primary care physicians after office visits (Delbanco et al., 2012). The study involved over 100 physicians and over 13,000 patients. Surveyed at the conclusion of the experiment, doctors reported that their relationships with patients were strengthened, and patients seemed more empowered. Sharing notes reinforced the verbal information and instructions given during office visits. Patients in the Delbanco et al. (2012) study overwhelmingly (99%) expressed enthusiasm about open access to doctors’ notes, and the majority opened some or all of the notes. Many reported greater adherence to their medications. Few were upset or confused about what they read. But can these positive research findings in primary care practice settings be translated into the mental health care arena? Kahn et al. (2014) ended their
editorial by saying, “It’s time to offer fully transparent care to our patients with mental illness” (p. 1292). Recalling the pejorative terms in some psychiatric providers’ notes (e.g., manipulative, noncompliant, histrionic, resistant) that I often saw during my years of active clinical practice, I wondered about the potential adverse reactions that could result from transparency. Even if provider notes contain no pejorative terms, it could be devastating for unprepared individuals to read that they have been diagnosed with a disease like schizophrenia or a personality disorder with negative connotations (e.g., borderline, narcissistic). To that end, Kahn et al. (2014) do acknowledge that care providers may need to withhold some of their notes from patients’ view. On the other hand, clinicians’ notes can be written in an entirely different way, describing rather than labeling. The JAMA article (Kahn et al., 2014, p. 1291) includes examples: Ms. Jones and I continued our discussion of her tendency to use “black-or-white thinking” in ways that make her relationships at work problematic. Mr. Smith and I continue to “agree to disagree” about his conviction that his apartment is bugged.
Seeing written records is undeniably different than halfremembering the content of verbal interactions with care providers. When patients see their problems identified in writing, remarkable changes in behavior may occur. A patient in the study by Delbanco et al. (2012) was apparently alarmed to see the term “mildly obese” in his record. This patient promptly undertook an exercise program and joined Weight Watchers. A patient could be gratified to read provider descriptions of strengths and affirmations of progress. Viewing one’s records also presents opportunities to correct mistakes. Based on my foray into the literature, psychiatric-mental health nurses have not been at the forefront of research or discussions on this topic. However, many nurses in the UK, Canada, Australia, and New Zealand have adopted the Tidal Model of Mental Health Recovery and Reclamation to guide their practice (Brookes, 2014). In facilities following the Tidal Model, all records of conversations between nurses and patients are written in the patients’ words, not the language of psychiatry (Barker & Buchanan-Barker, 2010). Nurses and patients collaborate in the
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FROM THE EDITOR
assessments and care planning, and patients retain copies of all assessments and care plans. Noted Barker and Buchanan-Barker (2010, p. 179): The idea that patients should be able to read their medical records and have access to copies of their care plans, is gaining credence around the world . . . As far as we are aware, no other model—nursing or otherwise—has focused all its attention on developing conjointly, accounts of the person’s experience, recorded in the person’s own words, which subsequently become the primary means for enabling the person’s recovery.
I invite manuscripts on the topic of sharing records with patients who have mental conditions. Physicians are researching and writing about this, but the nursing literature is scant. I would especially welcome studies examining both nurses’ and patients’ perspectives and experiences. Declaration of Interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.
REFERENCES Barker, P. (2001). The Tidal Model: Developing an empowering, person-centred approach to recovery within psychiatric and mental health nursing. Journal of Psychiatric and Mental Health Nursing, 8, 233–240. Barker, P., & Buchanan-Barker, P. (2010). The Tidal Model of mental health recovery and reclamation: Application in acute care settings. Issues in Mental Health Nursing, 31, 171–180. Brookes, N. (2014). The Tidal Model of mental health recovery. In M. R. Alligood (Ed.), Nursing theorists and their work (pp. 626–656). St. Louis, MO: Mosby Elsevier. Delbanco, T., Walker, J., Bell, S., Darer, J., Elmore, J., Farag, N. . . . Leveille, S. (2012). Inviting patients to read their doctors’ notes: A quasi-experimental study and a look ahead. Annals of Internal Medicine, 157, 461–470. Detmer, D., Bloomrosen, M., Raymond, B., & Tang, P. (2008). Integrated personal health records: Transformative tools for consumer-centric care. BMC Medical Informatics and Decision Making, 8, 45. Retrieved from http://www.biomedcentral.com/1472-6947-8-45 Jha, A., Bernadt, M., Brown, K., Sawicka, E., & Stein, G. (1998). Access to health records: Psychiatric patients and patients with diabetes compared. Psychiatric Bulletin, 22.5, 309–312. Pool, M., & Andresen, J. (1984–1985). The patient’s wish to see medical records. Psychiatric Forum, 13.1, 28–43. Roth, L., Wolford, J., & Meisel, A. (1980). Patient access to records: Tonic or toxin? The American Journal of Psychiatry, 137.5, 592–596.
Copyright of Issues in Mental Health Nursing is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
FROM THE EDITOR
Sharing Records with Patients with Mental Illness Sandra P. Thomas, PhD, RN, FAAN, Editor
An editorial (Kahn, Bell, Walker, & Delbanco, 2014) in the Journal of the American Medical Association (JAMA) piqued my interest and sent me on a search of other medical and nursing literature. The topic? Showing patients with mental illness their records. The authors argue that allowing patients to read what their doctors write about them will confer a number of benefits, while posing only a few risks. Kahn et al. (2014, p. 1291) contend that By writing notes useful to both patients and ourselves and then inviting them to read what we write, we may help patients address their mental health issues more actively and reduce the stigma they experience. [italics in original]
Permitting patients to read their records—and even modify them, in some cases—is entirely consistent with current philosophies of consumer-centric care (Detmer, Bloomrosen, Raymond, & Tang, 2008) and person-centered care (Barker, 2001). The idea is not new, as evidenced by a flurry of articles published in the 1980s and 1990s (e.g., Jha, Bernadt, Brown, Sawicka, & Stein, 1998; Pool & Andresen, 1984–1985; Roth, Wolford, & Meisel, 1980). But only now, in the twenty-first century, with the widespread adoption of electronic records, Internet access, and portal use, is the practice of record-sharing more feasible and more likely to receive acceptance. Recent research indicated a high degree of satisfaction, by both doctors and patients, with a year-long experiment in which patients could review (online) the notes written by their primary care physicians after office visits (Delbanco et al., 2012). The study involved over 100 physicians and over 13,000 patients. Surveyed at the conclusion of the experiment, doctors reported that their relationships with patients were strengthened, and patients seemed more empowered. Sharing notes reinforced the verbal information and instructions given during office visits. Patients in the Delbanco et al. (2012) study overwhelmingly (99%) expressed enthusiasm about open access to doctors’ notes, and the majority opened some or all of the notes. Many reported greater adherence to their medications. Few were upset or confused about what they read. But can these positive research findings in primary care practice settings be translated into the mental health care arena? Kahn et al. (2014) ended their
editorial by saying, “It’s time to offer fully transparent care to our patients with mental illness” (p. 1292). Recalling the pejorative terms in some psychiatric providers’ notes (e.g., manipulative, noncompliant, histrionic, resistant) that I often saw during my years of active clinical practice, I wondered about the potential adverse reactions that could result from transparency. Even if provider notes contain no pejorative terms, it could be devastating for unprepared individuals to read that they have been diagnosed with a disease like schizophrenia or a personality disorder with negative connotations (e.g., borderline, narcissistic). To that end, Kahn et al. (2014) do acknowledge that care providers may need to withhold some of their notes from patients’ view. On the other hand, clinicians’ notes can be written in an entirely different way, describing rather than labeling. The JAMA article (Kahn et al., 2014, p. 1291) includes examples: Ms. Jones and I continued our discussion of her tendency to use “black-or-white thinking” in ways that make her relationships at work problematic. Mr. Smith and I continue to “agree to disagree” about his conviction that his apartment is bugged.
Seeing written records is undeniably different than halfremembering the content of verbal interactions with care providers. When patients see their problems identified in writing, remarkable changes in behavior may occur. A patient in the study by Delbanco et al. (2012) was apparently alarmed to see the term “mildly obese” in his record. This patient promptly undertook an exercise program and joined Weight Watchers. A patient could be gratified to read provider descriptions of strengths and affirmations of progress. Viewing one’s records also presents opportunities to correct mistakes. Based on my foray into the literature, psychiatric-mental health nurses have not been at the forefront of research or discussions on this topic. However, many nurses in the UK, Canada, Australia, and New Zealand have adopted the Tidal Model of Mental Health Recovery and Reclamation to guide their practice (Brookes, 2014). In facilities following the Tidal Model, all records of conversations between nurses and patients are written in the patients’ words, not the language of psychiatry (Barker & Buchanan-Barker, 2010). Nurses and patients collaborate in the
495
496
FROM THE EDITOR
assessments and care planning, and patients retain copies of all assessments and care plans. Noted Barker and Buchanan-Barker (2010, p. 179): The idea that patients should be able to read their medical records and have access to copies of their care plans, is gaining credence around the world . . . As far as we are aware, no other model—nursing or otherwise—has focused all its attention on developing conjointly, accounts of the person’s experience, recorded in the person’s own words, which subsequently become the primary means for enabling the person’s recovery.
I invite manuscripts on the topic of sharing records with patients who have mental conditions. Physicians are researching and writing about this, but the nursing literature is scant. I would especially welcome studies examining both nurses’ and patients’ perspectives and experiences. Declaration of Interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.
REFERENCES Barker, P. (2001). The Tidal Model: Developing an empowering, person-centred approach to recovery within psychiatric and mental health nursing. Journal of Psychiatric and Mental Health Nursing, 8, 233–240. Barker, P., & Buchanan-Barker, P. (2010). The Tidal Model of mental health recovery and reclamation: Application in acute care settings. Issues in Mental Health Nursing, 31, 171–180. Brookes, N. (2014). The Tidal Model of mental health recovery. In M. R. Alligood (Ed.), Nursing theorists and their work (pp. 626–656). St. Louis, MO: Mosby Elsevier. Delbanco, T., Walker, J., Bell, S., Darer, J., Elmore, J., Farag, N. . . . Leveille, S. (2012). Inviting patients to read their doctors’ notes: A quasi-experimental study and a look ahead. Annals of Internal Medicine, 157, 461–470. Detmer, D., Bloomrosen, M., Raymond, B., & Tang, P. (2008). Integrated personal health records: Transformative tools for consumer-centric care. BMC Medical Informatics and Decision Making, 8, 45. Retrieved from http://www.biomedcentral.com/1472-6947-8-45 Jha, A., Bernadt, M., Brown, K., Sawicka, E., & Stein, G. (1998). Access to health records: Psychiatric patients and patients with diabetes compared. Psychiatric Bulletin, 22.5, 309–312. Pool, M., & Andresen, J. (1984–1985). The patient’s wish to see medical records. Psychiatric Forum, 13.1, 28–43. Roth, L., Wolford, J., & Meisel, A. (1980). Patient access to records: Tonic or toxin? The American Journal of Psychiatry, 137.5, 592–596.
Copyright of Issues in Mental Health Nursing is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
