OpenNotes: Research repository

Search for and review work conducted by OpenNotes faculty, scholars, and collaborators from a wide variety of settings in the U.S. and beyond.

For access to an author’s copy of a specific publication, consider reaching out directly to the first author. Their email address is often publicly available on the journal’s website.

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Clinician and patient perspectives on the exchange of sensitive social determinants of health information

DesRoches CM, Wachenheim D, Garcia A, et al. Clinician and patient perspectives on the exchange of sensitive social determinants of health information. JAMA Netw Open. 2024;7(10): e2444376

The findings of this study suggest that a multifaceted approach, taking both patients’ and clinicians’ concerns and preferences into account, is needed to improve the collection, documentation, and exchange of SDOH data to benefit both direct patient care and broader efforts at improving public health.

Leveraging an EHR patient portal to help patients formulate their healthcare goals: A mixed methods evaluation of pilot interventions

Naimark J, Tinetti ME, Delbanco T, Dong Z, Harcourt K, Esterson J, Charpentier P, Walker J. Leveraging an Electronic Health Record Patient Portal to Help Patients Formulate Their Health Care Goals: Mixed Methods Evaluation of Pilot Interventions. JMIR Form Res. 2024;8:e56332. doi: 10.2196/56332

This study tested self-directed tools for older adults with chronic conditions to identify healthcare priorities. Website engagement was low, but 26% completed an Epic previsit questionnaire. Most found it helpful, and physicians noted it facilitated end-of-life care discussions. Embedding these tools may improve priority-aligned care.

Shared access to adults’ patient portals: A secret shopper exercise

Wachenheim D, Hurwitz I, Dukhanin V, Wolff J, DesRoches CM. Shared access to adults’ patient portals: A secret shopper exercise. Applied Clinical Informatics. 2024

Our secret shopper exercise unveiled noteworthy variability in the experiences of 18 individuals attempting to grant or receive shared access to the patient portal, highlighting multiple barriers and facilitators to shared access. The findings underscore the imperative for cross- and intra-organizational collaboration aimed at learning from the diverse experiences of patients, care partners, clinicians, and staff, and disseminating best practices.

Overcoming systemic barriers to make patient-partnered research a reality

Venkataraman V, Martin-Giacalone BA, Drake BF, et al. Overcoming systemic barriers to make patient-partnered research a reality. Journal of Clinical Oncology. 2024

This commentary explores the barriers posed by processes of consent, data exchange, and EHR interoperability that hinder how researchers honor patients’ desires to contribute to the advancement of cancer research. To grow a thriving research ecosystem, we should minimize participants’ burden and develop systems that demonstrate our commitment and respect for their wishes to contribute to cancer research.

Gaps in the coordination of care for people living with dementia

Kern LM, Riffin C, Phongtankuel V, et al. Gaps in the coordination of care for people living with dementia. J Am Geriatr Soc. 2024; 1-10

This study examines care coordination breakdowns reported by patients living with dementia (PLWD) or their care partners. Interventions to improve communication across different care teams are needed to minimize the harmful effects of gaps in care coordination.

Patients need access to their medical records—now

Coulter A, Richards T, Giles C, Walker S. Patients need access to their medical records—now BMJ 2024; 386 :q1385

Despite initial professional resistance and policy delays, countries like Denmark, Estonia, Sweden, and the US have demonstrated that the benefits of full record access outweigh the risks. Patients globally are calling for interactive, user-friendly portals to access and correct their medical records, emphasizing that this is crucial for self-care, particularly in the post-pandemic era where healthcare access has declined.

Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach

Salmi L, Otis-Green S, Hayden A, Taylor LP, Reblin M, Kwan BM. Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach. Neuro-Oncology Practice, 2024;, npae052.

Malignant brain tumors (brain cancer) significantly affects the quality of life (QoL) of patients and their care partners, particularly in areas like cognition and communication. This study aimed to find out the top research priorities for palliative care in brain cancer using a collaborative, community-driven approach.

Patient portals fail to collect structured information about who else is involved in a person’s care

Salmi L, Peereboom D, Dorr D, Graham L, Wolff J, DesRoches C. Patient portals fail to collect structured information about who else is involved in a person’s care. J Med Internet Res. 2024;26: e49394.

“Shared access” uses separate identity credentials to differentiate between patients and care partner portal users. EHR vendors must recognize that both patients and care partners are important users of their products and acknowledge and support the critical contributions of care partners as distinct from patients.

When bad news comes through the portal: Strengthening trust and guiding patients when they receive bad results before their clinicians

Salmi L, Hubbard J, McFarland D. When bad news comes through the portal: Strengthening trust and guiding patients when they receive bad results before their clinicians. Am Soc Clin Oncol Educ Book. 2024;44(3).

In this chapter, perspectives from a patient with cancer, an oncologist, and a cancer psychiatrist (in that order) are shared to illuminate the adjustments made in clinician-patient communication amid the era of nearly instantaneous results within the electronic health record.

Psychiatrists’ perceptions of conditions and consequences associated with the implementation of open notes: Qualitative investigation

Schwarz J, Hoetger C, Pluschke L-S, et al. Psychiatrists’ perceptions of conditions and consequences associated with the implementation of open notes: Qualitative investigation. BMC Psychiatry. 2024;24(1).

Psychiatrists practiced in Germany where open notes have not yet been established as part of the healthcare data infrastructure. Open notes were perceived to increase transparency and patient involvement but were also believed to raise issues of stigmatization and conflicts.

Real-time electronic patient portal use among emergency department patients

Turer R, McDonald S, Lehmann C, et al. Real-time electronic patient portal use among emergency department patients. JAMA Netw Open. 2024;7(5):e249831

These findings suggest that real-time patient portal use during ED encounters has increased over time, but disparities exist in portal access that mirror trends in portal usage more generally. Given emergency medicine’s role in caring for medically underserved patients, there are opportunities for EDs to enroll and train patients in using patient portals to promote engagement during and after their visits.

A patient-centered documentation skills curriculum for preclerkship medical students in an open notes era

Eng K, Johnston K, Cerda I, Kadakia K, Mosier-Mills A, Vanka A. A patient-centered documentation skills curriculum for preclerkship medical students in an open notes era. MedEdPORTAL. 2024.

We developed this session for first-year medical students within their foundational clinical skills course to place bias-free language at the forefront of how they learn to construct a medical note. While the longitudinal impact remains to be seen, it is clear patient-centered documentation skills should be an integral part of documentation education.

Family perception of OpenNotes in the neonatal intensive care unit

McCallie K, Balasundaram M, Sarabu C. Family perception of OpenNotes in the neonatal intensive care unit. Appl Clin Inform. 2023.

At the end of the NICU discharge education, completed in the patient portal before discharge, families were offered an anonymous survey on OpenNotes. To the authors’ knowledge, this is the first study on NICU families’ perceptions of OpenNotes, which indicated positive interactions with the doctors’ daily progress notes and gave important suggestions for improvement.

Pediatric open notes: Caregiver experiences since the 21st century Cures Act

Kelly M, Kieren M, Coller R, et al. Pediatric open notes: Caregiver experiences since the 21st century Cures Act. Acad Pediatr. 2023.

While research on the impact of Open Notes in pediatric inpatient settings remains limited, recent findings have improved our understanding by adding actual caregiver experiences to the expectations identified in our initial study. As we move into this new era of transparency, we call for further investigation of the impact of note sharing on health care outcomes for children while continuing to develop strategies to mitigate challenges.

Adolescent access to clinicians’ notes: Adolescent, parent, and clinician perspectives

Sprackling C, Kieren M, Nacht C, et al. Adolescent access to clinicians' notes: Adolescent, parent, and clinician perspectives. J Adolesc Health. 2024; 74(1): 155-160.

This study aims to identify adolescent, parent, and clinician perspectives on the anticipated benefits and concerns of giving adolescents access to clinicians’ notes and strategies to support note-sharing in this population. These strategies may reinforce the potential benefits and mitigate the challenges of sharing notes with adolescent patients.

Do patients who read visit notes on the patient portal have a higher rate of “loop closure” on diagnostic tests and referrals in primary care? A retrospective cohort study

Bell S, Amat M, Anderson T, et al. Do patients who read visit notes on the patient portal have a higher rate of “loop closure” on diagnostic tests and referrals in primary care? A retrospective cohort study. JAMIA. 2024; ocad250

Compared to no portal registration, the odds of loop closure were 20% higher in tests/referrals for patients with a portal account, and 40% higher in tests/referrals for note readers, after controlling for sociodemographic and clinical factors. However, important safety gaps from unclosed loops remain, requiring additional engagement strategies.

Users’ experiences with online access to electronic health records in mental and somatic health care: Cross-sectional study

Wang B, Kristiansen E, Fagerlund A, et al., Users’ experiences with online access to electronic health records in mental and somatic health care: Cross-sectional study. J Med Internet Res. 2023; 25: e47840.

[…] This study aimed to provide insight into the impact of PAEHR [patient-accessible electronic health records] on patient care, particularly for those with mental health conditions, and to inform clinical strategies to improve the use of PAEHR in health care settings. The transition toward EHR accessibility may present health care professionals with a unique opportunity to change how they think and write about patients.

Co-designing an initiative to increase shared access to older adults’ patient portals: Stakeholder engagement

Dukhanin V, Wolff J, Salmi L, et al., Co-designing an initiative to increase shared access to older adults' patient portals: Stakeholder engagement. J Med Internet Res. 2023; 25: e46146.

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. Educational materials are publicly available at Coalition for Care Partners.

Effect of notes’ access and complexity on OpenNotes’ utility

Khasawneh A, Kratzke I, Adapa K, et al. Effect of notes' access and complexity on OpenNotes' utility. Appl Clin Inform. 2022; 13(5): 1015-1023.

Simplifying notes can improve understanding of notes for patients/families. However, perceived usability, cognitive workload, and satisfaction with even the simplified notes were still low. To make notes more useful for patients and their families, there is a need for dramatic improvements to the overall usability and content of the notes.

Internal medicine intern preparedness to document clinical encounters in the era of open notes: A needs assessment survey

Schiller P, Wong C, Golob A, et al. Internal medicine intern preparedness to document clinical encounters in the era of open notes: A needs assessment survey. JGIM. 2023; 38: 1556–1558.

[…] This study identifies a need to improve documentation education in the era of open notes. Additional research into the best ways to teach, write, and incorporate open notes into practice may empower trainees to use documentation to further improve patient care.

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Search for and review work conducted by OpenNotes faculty, scholars, and collaborators from a wide variety of settings in the U.S. and beyond.

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Search for and review work conducted by OpenNotes faculty, scholars, and collaborators from a wide variety of settings in the U.S. and beyond.

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