Open Notes in Oncology: Patient versus Oncology Clinician Views

Salmi, Liz; Dong, Zhiyong; Yuh, Bertram; Walker, Jan; DesRoches, Catherine M.

doi:10.1016/j.ccell.2020.09.016

Cited by 27 publications

(33 citation statements)

References 4 publications

(3 reference statements)

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“…One promising action to reduce such disparities in portal use is to aim for universal access to health information technology tools and to become aware of users' health literacy levels and preferred ways of communicating with the providers [66]. While provider encouragement is one of the factors associated with increased access and use of patient portals [67][68][69][70], referrals vary by patient race, socioeconomic status, and providers' personal beliefs about the benefits of patient portal use, contributing significantly to access disparities [22,71]. Targeting providers with additional patient portal referral training could be an effective strategy for increasing patient portal adoption among cancer patients, as demonstrated in studies of other patient populations [72][73][74].…”

Section: Principal Findingsmentioning

confidence: 99%

“…For example, features such as OpenNotes, which allow patients to access provider notes via portals, have shown promise in increasing feelings in patients of being informed and in control of their care, thus increasing trust in clinicians [57,[77][78][79][80]. Oncology patients who face a greater information burden have shown enthusiasm for reading their clinicians' notes [22]. Another approach to increase patient portal use in cancer care is promoting interventions targeting portal awareness and supporting patients accessing their notes.…”

Section: Principal Findingsmentioning

confidence: 99%

“…They enable patients to view their medical records, communicate via secure messaging with their care teams, access lab results, renew prescriptions, request appointments, and pay their medical bills [15,16]. Even though patient portals have been documented to improve patient engagement, increase PCC, advance health care quality, and improve psychosocial outcomes in medical care [17][18][19], their optimal use in cancer care delivery has not yet been achieved [20][21][22].…”

Section: Introductionmentioning

confidence: 99%

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Association Between Patient Portal Use and Perceived Patient-Centered Communication Among Adults With Cancer: Cross-sectional Survey Study

Zaidi¹,

Amante²,

Anderson³

et al. 2022

JMIR Cancer

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Background Patient-centered communication (PCC) plays a vital role in effective cancer management and care. Patient portals are increasingly available to patients and hold potential as a valuable tool to facilitate PCC. However, whether more frequent use of patient portals is associated with increased perceived PCC and which mechanisms might mediate this relationship have not been fully studied. Objective The goal of this study was to investigate the association between the frequency of access of patient portals and perceived PCC in patients diagnosed with cancer. We further sought to examine whether this association was mediated by patients’ self-efficacy in health information–seeking. Methods We used data from the Health Information National Trend Survey 5 (HINTS 5) cycle 3 (2019) and cycle 4 (2020). This analysis includes 1222 individuals who self-reported having a current or past diagnosis of cancer. Perceived PCC was measured with a 7-item HINTS 5–derived scale and classified as low, medium, or high. Patient portal use was measured by a single item assessing the frequency of use. Self-efficacy about health information–seeking was assessed with a 1-item measure assessing confidence in obtaining health information. We used adjusted multinomial logistic regression models to estimate relative risk ratios (RRRs)/effect sizes of the association between patient portal use and perceived PCC. Mediation by health information self-efficacy was investigated using the Baron and Kenny and Karlson-Holm-Breen methods. Results A total of 54.5% of the sample reported that they had not accessed their patient portals in the past 12 months, 12.6% accessed it 1 to 2 times, 24.8% accessed it 3 to 9 times, and 8.2% accessed it 10 or more times. Overall, the frequency of accessing the patient portal was marginally associated (P=.06) with perceived PCC in an adjusted multinominal logistic regression model. Patients who accessed their patient portal 10 or more times in the previous 12 months were almost 4 times more likely (RRR 3.8, 95% CI 1.6-9.0) to report high perceived PCC. In mediation analysis, the association between patient portal use and perceived PCC was attenuated adjusting for health information–seeking self-efficacy, but those with the most frequent patient portal use (10 or more times in the previous 12 months) were still almost 2.5 times more likely to report high perceived PCC (RRR 2.4, 95% CI 1.1-5.6) compared to those with no portal use. Conclusions Increased frequency of patient portal use was associated with higher PCC, and an individual’s health information–seeking self-efficacy partially mediated this association. These findings emphasize the importance of encouraging patients and providers to use patient portals to assist in patient-centeredness of cancer care. Interventions to promote the adoption and use of patient portals could incorporate strategies to improve health information self-efficacy.

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Section: Principal Findingsmentioning

confidence: 99%

Section: Principal Findingsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Association Between Patient Portal Use and Perceived Patient-Centered Communication Among Adults With Cancer: Cross-sectional Survey Study

Zaidi¹,

Amante²,

Anderson³

et al. 2022

JMIR Cancer

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“…Current research suggests oncology patients are almost universally favorable toward open notes, and oncology clinicians are somewhat less favorable. 31 Re-structuring note templates with patients in mind, especially the "assessment and plan" section, 30 may facilitate patient understanding. 32 Reducing jargon, copy-pasting of previous notes, and avoiding certain phrases, for example, "patient denies," could help patients understand their own illness and treatment better and avoid unwarranted concerns.…”

Section: Discussionmentioning

confidence: 99%

The Healthcare Journey of Women With Advanced Gynecological Cancer From Diagnosis Through Terminal Illness: Qualitative Analysis of Progress Note Data

Dillon

Chopra

Mesghina

et al. 2021

Am J Hosp Palliat Care

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Objective To examine women’s journeys with gynecologic cancer from before diagnosis through death and identify elements of their healthcare experience that warrant improvement. Methods This exploratory study used longitudinal progress notes data from a multispecialty practice in Northern California. The sample included women with stage IV gynecological cancer diagnosed after 2011 and who died before 2018. Available progress notes from prior to diagnosis to death were qualitatively analyzed. Results We identified 32 women, (median age 61 years) with mostly uterine (n=17) and ovarian (n=9) cancers and median survival of 9.2 months (min:2.9 and max:47.5). Sixteen (50%) received outpatient palliative care and 18 (56%) received hospice care. The analysis found wide variation in documentation about communication about diagnosis, prognosis, goals of care, stopping treatment, and starting hospice care. Challenges included escalating/severe symptoms, repeated urgent care/emergency department/hospital encounters, and lack of or late access to palliative and hospice care. Notes also illustrated how patient background and goals influenced care trajectory and communication. Documentation styles varied substantially, with palliative care notes more consistently documenting conversations about goals of care and psychosocial needs. Conclusion This analysis of longitudinal illness experience of women with advanced gynecological cancer suggests that clinicians may want to (1) prioritize earlier discussion about goals of care; (2) provide supplemental support to patients with higher needs, possibly through palliative care or navigation; and (3) write notes to enhance patient understanding now that patients may access all notes.

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“…Even as digital health technologies have allowed more patient data elements to be collected, a challenge is that patients have access to view only a fraction of this data. Nearly 100% of patients with cancer wish to have access to clinical notes ( 77 ). In April 2021, the 21st Century Cures Act Interoperability and Information Blocking Rule formally went into effect, penalizing health-care organizations, certified EHR vendors, and health information networks and exchanges that interfere with sharing electronic health information for any purpose where such sharing is permitted by law, including with the patient.…”

Section: Opportunities Moving Forwardmentioning

confidence: 99%

Digital Health Applications in Oncology: An Opportunity to Seize

Parikh

Basen-Enquist

Estrin

et al. 2022

JNCI: Journal of the National Cancer Institute

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Digital health advances have transformed many clinical areas including psychiatric and cardiovascular care. However, digital health innovation is relatively nascent in cancer care, which represents the fastest-growing area of health care spending. Opportunities for digital health innovation in oncology include patient-facing technologies that improve patient experience, safety, and patient-clinician interactions; clinician-facing technologies that improve their ability to diagnose pathology and predict adverse events; and quality of care and research infrastructure to improve clinical workflows, documentation, decision support, and clinical trial monitoring. The COVID-19 pandemic and associated shifts of care to the home and community dramatically accelerated the integration of digital health technologies into virtually every aspect of oncology care. However, the pandemic has also exposed potential flaws in the digital health ecosystem, namely in clinical integration strategies; data access, quality, and security; and regulatory oversight and reimbursement for digital health technologies. Stemming from the proceedings of a 2020 workshop convened by the National Cancer Policy Forum of the National Academies of Sciences, Engineering, and Medicine, this article summarizes the current state of digital health technologies in medical practice and strategies to improve clinical utility and integration. These recommendations, with calls to action for clinicians, health systems, technology innovators, and policymakers, will facilitate efficient yet safe integration of digital health technologies into cancer care.

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Open Notes in Oncology: Patient versus Oncology Clinician Views

Cited by 27 publications

References 4 publications

Association Between Patient Portal Use and Perceived Patient-Centered Communication Among Adults With Cancer: Cross-sectional Survey Study

Association Between Patient Portal Use and Perceived Patient-Centered Communication Among Adults With Cancer: Cross-sectional Survey Study

The Healthcare Journey of Women With Advanced Gynecological Cancer From Diagnosis Through Terminal Illness: Qualitative Analysis of Progress Note Data

Digital Health Applications in Oncology: An Opportunity to Seize

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