Deciding on My Dimples Salmi, Liz
The New England journal of medicine,
12/2022, Letnik:
387, Številka:
23
Journal Article
Recenzirano
During an awake craniotomy for resecting part of her astrocytoma, a patient-investigator faces a high-stakes decision that she will make in collaboration with her neurosurgeon.
Importance To solicit the view of an international panel of experts on the effects on mental health patients, including possible benefits and harms, of accessing their clinical notes. An online ...3-round Delphi poll. Online. International experts identified as clinicians, chief medical information officers, patient advocates, and informaticians with extensive experience and/or research knowledge about patient access to mental health notes. An expert-generated consensus on the benefits and risks of sharing mental health notes with patients. A total of 70 of 92 (76%) experts from 6 countries responded to Round 1. A qualitative review of responses yielded 88 distinct items: 42 potential benefits, and 48 potential harms. A total of 56 of 70 (80%) experts responded to Round 2, and 52 of 56 (93%) responded to Round 3. Consensus was reached on 65 of 88 (74%) of survey items. There was consensus that offering online access to mental health notes could enhance patients' understanding about their diagnosis, care plan, and rationale for treatments, and that access could enhance patient recall and sense of empowerment. Experts also agreed that blocking mental health notes could lead to greater harms including increased feelings of stigmatization. However, panelists predicted there could be an increase in patients demanding changes to their clinical notes, and that mental health clinicians would be less detailed/accurate in documentation. This iterative process of survey responses and ratings yielded consensus that there would be multiple benefits and few harms to patients from accessing their mental health notes. Questions remain about the impact of open notes on professional autonomy, and further empirical work into this practice innovation is warranted.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are ...increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients and care partners. Although not well-known, or commonly used, shared access allows patients to identify who they do and do not want to be involved in their care. However, the processes for patients to grant shared access to portals are often limited or so onerous that interested patients and care partners often circumvent the process entirely. As a result, the vast majority of care partners resort to accessing portals using a patient’s identity credentials—a “do-it-yourself” solution in conflict with a health systems’ legal responsibility to protect patient privacy and autonomy. The personal narratives in this viewpoint (shared by permission) elaborate on quantitative studies and provide first-person snapshots of challenges faced by patients and families as they attempt to gain or grant shared access during crucial moments in their lives. As digital modalities increase patient roles in health care interactions, so does the importance of making shared access work for all stakeholders involved—patients, clinicians, and care partners. Electronic health record vendors must recognize that both patients and care partners are important users of their products, and health care organizations must acknowledge and support the critical contributions of care partners as distinct from patients.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
Abstract
Today’s patients exist in a new culture of “peer health advice” where people with similar lived experiences are crowdsourcing health questions and relying on the advice of others. ...Additionally, Google reports there are 70,000 health-related searches happening every 60 seconds. People are naturally turning to social media and the Internet for health information, and yet it is quite difficult for most people to gain access to the detailed information in their own health records. Medical record requests—whether for transitions in care, for greater understanding, or as a requirement to participate in research—take time and effort, and costs are often involved. This creates a massive barrier and delay to accessing potentially life-saving information. In this presentation Liz Salmi will share her own patient experience and the barriers she faced in participating in research. Based on her personal experience, and now her work with the OpenNotes research team, she will outline simple steps health systems and researchers can put into place to make it easier for patients to engage more meaningfully in the health information that is their own.
Citation Format: Liz Salmi. Making it easier to participate in research: A patient’s perspective abstract. In: Proceedings of the AACR Special Conference on Advancing Precision Medicine Drug Development: Incorporation of Real-World Data and Other Novel Strategies; Jan 9-12, 2020; San Diego, CA. Philadelphia (PA): AACR; Clin Cancer Res 2020;26(12_Suppl_1):Abstract nr IA07.
Background
People with lived health care experiences (often referred to as “patients”) are increasingly contributing to health care and are most effective when they are involved as partners who can ...contribute complementary knowledge alongside other stakeholders in health care.
Objective
Convening The Center aimed to bring together “people known as patients”—the center of health care—to address priorities as they defined them.
Methods
According to the original project design, an in-person gathering was to be conducted; however, as a result of the COVID-19 pandemic, the in-person gathering was transformed into a series of digital gatherings, including an in-depth interview phase, small-group gatherings, and a collective convening of 25 participants (22 women and 3 men from the United States, India, Costa Rica, Sweden, and Pakistan). Each participant was interviewed on Zoom (Zoom Video Communications Inc), and the interview data were thematically analyzed to design a subsequent small group and then full cohort Zoom sessions. Visual note-taking was used to reinforce a shared understanding of each individual- and group-level conversation.
Results
The interviews and gatherings for Convening The Center offered unique perspectives on patient activities in research, health innovation, and problem-solving. This project further developed a novel, two-spectrum framework for assessing different experiences that patients may have or seek to gain, based on what patients actually do, and different levels of patients’ involvement, ranging from individual to community to systemic involvement.
Conclusions
The descriptors of patients in academic literature typically focus on what health care providers think patients “are” rather than on what patients “do.” The primary result of this project is a framework for mapping what patients “do” and “where” they do their work along two spectra: from creating their own projects to contributing to work initiated by others and from working at levels ranging from individual to community to systems. A better understanding of these spectra may enable researchers to more effectively engage and leverage patient expertise in health care research and innovation.
The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many ...organizations allow patients to authorize family members or friends-"care partners"-to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited.
We partnered with 3 health care organizations to co-design an initiative that aimed to increase shared access registration and use and that can be implemented using existing patient portals.
In 2020, we undertook a rigorous selection process to identify 3 geographically diverse health care organizations that had engaged medical informatics teams and clinical champions within service delivery lines caring for older adults. We prioritized selecting organizations that serve racially and socioeconomically diverse populations and possess sophisticated reporting capabilities, a stable patient portal platform, a sufficient volume of older adult patients, and active patient and family advisory councils. Along with patients and care partners, clinicians, staff, and other stakeholders, the study team co-designed an initiative to increase the uptake of shared access guided by either an iterative, human-centered design process or rapid assessment procedures of stakeholders' inputs.
Between February 2020 and April 2022, 73 stakeholder engagements were conducted with patients and care partners, clinicians and clinic staff, medical informatics teams, marketing and communications staff, and administrators, as well as with funders and thought leaders. We collected insights regarding (1) barriers to awareness, registration, and use of shared access; (2) features of consumer-facing educational materials to address identified barriers; (3) features of clinician- and staff-facing materials to address identified barriers; and (4) approaches to fit the initiative into current workflows. Using these inputs iteratively via a human-centered design process, we produced brochures and posters, co-designed organization-specific web pages detailing shared access registration processes, and developed clinician and staff talking points about shared access and staff tip sheets that outline shared access registration steps. Educational materials emphasized the slogan "People remember less than half of what their doctors say," which was selected from 9 candidate alternatives as resonating best with the full range of the initiative's stakeholders. The materials were accompanied by implementation toolkits specifying and reinforcing workflows involving both in-person and telehealth visits.
Meaningful and authentic stakeholder engagement allowed our deliberate, iterative, and human-centered co-design aimed at increasing the use of shared access. Our initiative has been launched as a part of a 12-month demonstration that will include quantitative and qualitative analysis of registration and use of shared access. Educational materials are publicly available at Coalition for Care Partners.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
From April 5, 2021, as part of the 21st Century Cures Act, all providers in the United States must offer patients access to the medical information housed in their electronic records. Via secure ...health portals, patients can log in to access lab and test results, lists of prescribed medications, referral appointments, and the narrative reports written by clinicians (so-called open notes). As US providers implement this practice innovation, we describe six promising ways in which patients' access to their notes might help address problems that either emerged with or were exacerbated by the COVID-19 pandemic.
The move to share access to clinical records signals a more equal partnership between patients and clinicians. In adopting this innovation, England follows other countries such as Sweden and the US, ...where both experiences of clinicians, before and after patient access, and patients’ experiences with reading their notes have attracted scrutiny.383940 In England, since April 2019 the GP contract committed practices to offer full online access on a prospective basis to new patients—that is, from the date patients request it.41 Notably, by July 2022, 48.1% of patients had signed up for at least one service, but only 13.7% were able to view their detailed coded record.42 Information regarding the percentage of patients with full access to their records—including free-text consultation entries—is not publicly available, but currently the level of access granted varies and is a source of frustration for patients.43
Many physicians worry that access to notes in oncology will increase confusion and anxiety among their patients;5 however, these concerns do not appear to be proven. Since 2009, the practice has been ...implemented at the University of Texas MD Anderson Cancer Center (Houston, TX, USA), with no reports of patient harm or legal action. ...three (6%) patients reported being more confused after receiving their notes and two (4%) patients regretted reading their notes. ...several analyses indicated no evidence exists of objective changes—eg, word length, number of words per sentence, or the positive or negative emotional tone—to oncology documentation after patient access was permitted.9 Although the findings are encouraging, the possibility of response bias in surveys and the restriction of studies to a few medical centres leaves some uncertainty and unanswered questions.
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