{"id":4160,"date":"2021-05-13T06:39:17","date_gmt":"2021-05-13T05:39:17","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-ethics\/?p=4160"},"modified":"2021-05-16T22:18:22","modified_gmt":"2021-05-16T21:18:22","slug":"knowledge-power-and-patients-the-ethics-of-open-notes","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-ethics\/2021\/05\/13\/knowledge-power-and-patients-the-ethics-of-open-notes\/","title":{"rendered":"Knowledge, power, and patients: The ethics of open notes"},"content":{"rendered":"

By Charlotte Blease, Catherine DesRoches, Maria H\u00e4gglund, Adam Hayden, Hanife Rexhepi, & Liz Salmi<\/p>\n

Most of us now use the internet to check the health of our bank balance. Worldwide, however, the majority of patients still cannot inspect their actual healthcare records online.<\/p>\n

From April 5 in the USA<\/a> the law changed. With few exceptions it is now mandatory to offer patients access to their electronic health records, including the very words written by clinicians \u2013 a practice known as \u2018open notes\u2019. In Scandinavia, this innovation is already advanced.<\/p>\n

But do patients really need access to their health information, or should electronic health records be the sole preserve of physicians? We explore this question using our own case studies.<\/p>\n

Case 1: \u201cCompelled to Google\u201d<\/strong><\/p>\n

In the Spring of 2018, my [CB\u2019s] partner \u2013 a journalist on a UK national newspaper \u2013 was diagnosed with stomach cancer, a moment we\u2019ll never forget. As a highly experienced writer and interviewer \u2013 never without a notepad and pen to dash off shorthand \u2013 beyond the actual diagnosis, he could recall scarcely any details of that consultation. As a result, between oncology visits, he requested copies of his clinical notes \u2013 several times. Awaiting more info, and feeling mystified and exhausted, both he and I spent sleepless nights on Google in a desperate attempt to try to understand his diagnosis.<\/p>\n

Case 2: \u201cThe post-it note\u201d<\/strong><\/p>\n

When an x-ray revealed that my [MH\u2019s] father\u2019s lungs were full of metastatic tumours, I took on the role of tracking all referrals and contacts with the different healthcare providers. In Sweden, I\u2019d experienced the benefits of reading my online clinical information, but the region where my father lived didn\u2019t yet provide such access. At one visit, after asking for copies of his referrals, we were eventually offered scribbles on a post-it note. On good days, I blame the lack of proper technical solutions, on bad days I cannot help but discern an unwillingness to provide us with the information we so desperately needed.<\/p>\n

 <\/p>\n

\"\"<\/p>\n

The post-it note (photo credit: Maria H\u00e4gglund)<\/p>\n

 <\/p>\n

Case 3: \u201cWhat patients say and what doctors hear\u201d<\/strong><\/p>\n

\u201cIf there were something seriously wrong, you\u2019d be in much worse shape,\u201d a general practitioner reassured me [AH]. My gut told me otherwise. Six months later, and 15 months after first symptom presentation, I was sent for an MRI scan that revealed a 71mm primary brain tumour: glioblastoma. Turns out that I was, in fact, in much worse shape. I had tracked my own symptoms for months. Access to my clinical notes might have afforded an opportunity to compare, as Danielle Ofri, MD writes in her book of the same title, \u201cwhat patients say and what doctors hear.\u201d<\/p>\n

Case 4: \u201cAverting medication error\u201d<\/strong><\/p>\n

In the fall of 2019, my [CD\u2019s] elderly aunt fell and fractured her pelvis. Arriving at the hospital emergency department, a nurse was preparing to give my aunt her \u201cregular medications.\u201d \u201cHow do you know what medications she takes?\u201d I asked \u2013 knowing that C was not cognitively capable of remembering her many medications. \u201cI looked in our EHR,\u201d said the nurse. The medications listed in the hospital\u2019s EHR were from a hospitalization two years prior and woefully out of date. It was only because I was able to access all of C\u2019s health information through a patient portal that I was able prevent a serious medication error.<\/p>\n

Case 5: \u201cAbove average\u201d<\/strong><\/p>\n

After my hospital launched open notes, I [LS] read someone had added above<\/em> average health literacy<\/em> to my record. I smiled at the compliment, but a nurse practitioner friend had a different take all together. \u201cThat\u2019s not a compliment,\u201d she said. \u201cThat\u2019s a warning to watch what you say around this patient.\u201d I stopped smiling. I had heard clinicians sometimes use coded language in patient records but never thought it would apply to me. How could being a savvy, engaged patient be a threat? Might clinicians be forming preconceptions about me, or dumbing down their communication to avoid discussion or disagreement?<\/p>\n

Case 6: \u201cTrust through transparency\u201d<\/strong><\/p>\n

In 2015, I [HR] was diagnosed with a brain tumour. This distressing period of my life led to anxiety and depression. I started seeing a therapist. During our first meeting she recommended I access my mental health clinical notes. By reading her words, I began to better understand my depression. The meetings with the therapist together with the clinical notes helped me develop self-care strategies. Trust in my therapist also increased. By reading the notes I was able to identify misconceptions that occurred during our conversations and correct them at the next meeting.<\/p>\n

In our paper, \u201cPatients, clinicians, and open notes: Information blocking as a case of epistemic injustice\u201d we go beyond personal case studies. Drawing on a range of international surveys and findings we explore the practical, ethical, and patient safety consequences of denying individuals online access to their clinical notes and records.<\/p>\n

 <\/p>\n

Paper title:<\/strong> Patients, clinicians, and open notes: Information blocking as a case of epistemic injustice<\/a>\u00a0 \u00a0 OPEN ACCESS PUBLICATION<\/em><\/p>\n

Authors:<\/strong><\/p>\n

Charlotte Blease; Twitter: @crblease<\/p>\n

Catherine DesRoches; Twitter: @cmd418<\/p>\n

Maria H\u00e4gglund; Twitter: @mariahagglund<\/p>\n

Adam Hayden; Twitter: @adamhayden<\/p>\n

Hanife Rexhepi; Twitter: @haniferexhepi<\/p>\n

Liz Salmi; Twitter: @TheLizArmy<\/p>\n

Affiliations:<\/strong><\/p>\n

CB, CD, LS: Division of General Medicine, Beth Israel Deaconess Medical Center, Boston, USA.<\/p>\n

CD: Harvard Medical School, Boston, USA.<\/p>\n

MH: Department of Women\u2019s and Children\u2019s Health, Uppsala University and Uppsala University Hospital, Uppsala, Sweden.<\/p>\n

HR: Department of Informatics at the University of Sk\u00f6vde, Sweden.<\/p>\n

AH: Indiana University, Indianapolis, USA.<\/p>\n

Competing interests:<\/strong> None.<\/p>\n

Social media accounts of post authors:<\/strong> @crblease; @cmd418; @mariahagglund; @adamhayden; @haniferexhepi; @TheLizArmy<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

By Charlotte Blease, Catherine DesRoches, Maria H\u00e4gglund, Adam Hayden, Hanife Rexhepi, & Liz Salmi Most of us now use the internet to check the health of our bank balance. Worldwide, however, the majority of patients still cannot inspect their actual healthcare records online. From April 5 in the USA the law changed. With few exceptions […]<\/p>\n

Read More…<\/a><\/p>\n","protected":false},"author":353,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8057],"tags":[],"class_list":["post-4160","post","type-post","status-publish","format-standard","hentry","category-medical-ethics"],"yoast_head":"\nKnowledge, power, and patients: The ethics of open notes - Journal of Medical Ethics blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/medical-ethics\/2021\/05\/13\/knowledge-power-and-patients-the-ethics-of-open-notes\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Knowledge, power, and patients: The ethics of open notes - Journal of Medical Ethics blog\" \/>\n<meta property=\"og:description\" content=\"By Charlotte Blease, Catherine DesRoches, Maria H\u00e4gglund, Adam Hayden, Hanife Rexhepi, & Liz Salmi Most of us now use the internet to check the health of our bank balance. 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