Looking Back at 2024: A Year of Growth, Discovery, and Collaboration in OpenNotes Research

January 2, 2025

A MESSAGE FROM CAIT

As we step into 2025, we at OpenNotes find it the perfect time to reflect on the achievements of the past year.

In 2024, we contributed to the growing movement of transparency in healthcare by contributing to ten peer-reviewed articles. These projects spanned topics including patient portals, sensitive communication, shared decision-making, and patient-centered documentation. Each publication reinforces our mission to empower patients and care partners by improving how they access and engage with their health information.

None of this work would have been possible without the dedication of our collaborators, co-authors, and partners across academic institutions, healthcare systems, and patient advocacy groups. Your passion and creativity inspire us daily, and we’re grateful to have you alongside us on this journey. Let’s take a moment to celebrate the highlights of 2024 and the transformative work that shaped the year.

Warm regards,

Catherine (Cait) M. DesRoches, DrPH
Executive Director, OpenNotes, Beth Israel Deaconess Medical Center
Associate Professor, Harvard Medical School

---

1. Guidelines for Patient-Centered Documentation in the Era of Open Notes

Published in JMIR Medical Education. Read more.
Vanka et al. developed practical guidelines to help clinicians create clear, respectful, and empowering medical notes in the open notes era. This qualitative study is a valuable resource for anyone embracing greater transparency in clinical documentation.

2. Clinician and Patient Perspectives on Sensitive Social Determinants of Health (SDOH) Information

Published in JAMA Network Open. Read more.
DesRoches et al. explored the complexities of documenting sensitive SDOH information in open notes. Their findings reveal opportunities to strengthen trust and ensure meaningful dialogue when addressing deeply personal topics.

3. Helping Patients Formulate Health Goals Using Patient Portals

Published in JMIR Formative Research. Read more.
Naimark et al. evaluated how patient portals can help patients articulate their healthcare goals. Their mixed-methods study shows how these tools can foster shared decision-making and patient engagement.

4. Shared Access to Adults’ Patient Portals: A Secret Shopper Exercise

Published in Applied Clinical Informatics. Read more.
Wachenheim et al. conducted a unique “secret shopper” exercise to assess shared portal access. Their findings provide valuable insights for improving usability and inclusivity in patient portal design.

5. Overcoming Systemic Barriers to Patient-Partnered Research

Published in the Journal of Clinical Oncology. Read more.
Venkataraman et al. outlined strategies to address systemic barriers to patient-partnered research. Their work underscores the importance of making patients true partners in research and policy development.

6. Gaps in Care Coordination for People Living with Dementia

Published in the Journal of the American Geriatrics Society (JAGS). Read more.
Kern et al. highlighted persistent challenges in coordinating care for patients with dementia. Their findings point to actionable ways open notes can help bridge these gaps and better support families and caregivers.

7. Research Priorities for Palliative Care in Malignant Brain Tumors

Published in Neuro-Oncology Practice. Read more.
Salmi et al. used a participatory co-design approach to identify research priorities for palliative care in patients with malignant brain tumors. This study showcases the value of involving patients and caregivers in the design of care services.

8. Patient Portals and Caregiver Involvement: A Missed Opportunity

Published in the Journal of Medical Internet Research (JMIR). Read more.
Salmi et al. found that patient portals often fail to collect structured information about care partners. Their research emphasizes the need to redesign portals to better support shared care and coordination.

9. Strengthening Trust When Delivering Bad News via Patient Portals

Published in the ASCO Education Book. Read more.
Receiving bad news via a portal is a growing reality for patients. Salmi et al. offer strategies for clinicians to support patients and maintain trust when bad news arrives before a conversation with their provider.

10. Teaching Patient-Centered Documentation to Medical Students

Published in MedEdPORTAL. Read more.
Eng et al. created a curriculum that prepares medical students to write clear and compassionate notes for patients in the open notes era. Their work ensures the next generation of clinicians is equipped for transparency.