One of many research findings covered by Charlotte Blease's book is the fact that 96% of patients want to have their results straight away before the doctor or nurse sees the results - even if the results carry bad news. I would too, and so did patients who took part in the 2003 UK Department of Health "Copying letters to patients" project. The report was made within the framework of the Access to Medical Reports Act 1988, Data Protection Act 1998, Disability Discrimination Act 1995, Health and Social Care Act 2001, and the Human Rights Act 1998.
Citizens like to hear the news on the radio or TV as soon as possible, too. Below is an extract from healthcare-in-europe.com Bad news from test results? Patients still want to know right away • healthcare-in-europe.com
"Bad news from test results? Patients still want to know right away
"In April 2021, new federal rules went into effect mandating that healthcare providers make nearly all test results and clinical notes immediately available to patients.
"Evidence suggests that patients may gain important clinical benefits by reviewing their medical records, and access through electronic patient portals has been advocated as a strategy for empowering patients to manage their health care and for strengthening patient-clinician relationships. However, concerns remain about the effects of releasing test results to patients before clinicians offer counsel or interpretation.
"In a recent multisite survey of more than 8,000 patients who accessed their test results via an online patient portal account, researchers at Beth Israel Deaconess Medical Center (BIDMC) and colleagues found that users overwhelmingly supported receiving the results immediately, even if their provider had not yet reviewed them. The findings, published in JAMA Network Open, showed only a small subset of patients reported experiencing additional worry after receiving abnormal test results. In addition, pre-counseling by the health care team before tests were ordered was linked to reduced worry among patients with abnormal results.
=
As healthcare systems continue to navigate this new era of health information transparency, balancing patients’ expectation of immediate access to their information with the need to manage increased worry is important
Liz Salmi
=
“Online patient portals have emerged as important tools for increasing patient engagement,” said co-senior author Catherine M. DesRoches, DrPH, executive director of OpenNotes, the international movement based at BIDMC focused on increasing information transparency in healthcare, and associate professor of medicine at Harvard Medical School. “They enable patients to access information, participate in medical decision-making and to communicate with clinicians. Prior studies performed by OpenNotes investigators established immediate release of clinical notes as a recommended best practice. However, releasing test results to patients immediately, often before a clinician can provide counselling and context, was yet to be studied widely and remains controversial.”
"To assess patient and caregiver attitudes and preferences related to receiving test results through the patient portal, DesRoches and colleagues delivered surveys to more than 43,000 patients and care partners who accessed their test results via an online patient portal account between April 2021 and April 2022. The survey was fielded in four geographically diverse medical centers; University of California, Davis Health, University of Colorado Anschutz Medical Center, University of Texas Southwestern Medical Center and Vanderbilt University Medical Center. Adapted from a previously validated instrument, the 29-question survey covered topics including test result information, result review behavior, education and follow-up by providers, the effect of reviewing results on health and well-being, and user preferences for receiving future test results.
"Of the 8,139 survey respondents, 80% reported reviewing at least one test result in the past month. Most respondents (57%) reported normal findings. When asked about their preferences for contacts about future test results, 90% of respondents with normal results indicated they would prefer receiving their result via the patient portal. Nearly all respondents, 96%, indicated a preference for receiving results through the patient portal as soon as they are available, even if their provider had not yet reviewed them.
HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data Email address: richardpeterfitton7 AT gmail.com