Report of Scholarship

“I have no special talent. I am only passionately curious.”

— Albert Einstein

My research areas of interest include:

  • the effects of transparency on patient-clinician communication

  • stakeholder engagement

  • research dissemination

  • the role of social media in patient-clinician-researcher collaborations

Exciting Publication

“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.”

Screenshot of paper: Deciding on My Dimples
New England Journal of Medicine

Publications

(ORCID ID: 0000-0003-3798-7438)

Select publications listed in chronological order. Full academic CV available upon request. Links are updated periodically.

🔓 denotes open access

💥 denotes author’s excitement

Research investigations

  1. Katz MS, Anderson PF, Thompson MA, Salmi L, Freeman-Daily J, Utengen A, Dizon DS, Blotner C, Cooke DT, Sparacio D, Staley AC, Fisch MJ, Young C, Attai DJ. Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities. JCO Clinical Cancer Informatics. 2019;(3):1-10. doi:10.1200/cci.18.00124 🔓

  2. Cutshall NR, Kwan BM, Salmi L, Lum HD. “It Makes People Uneasy, but It's Necessary. #BTSM”: Using Twitter to Explore Advance Care Planning among Brain Tumor Stakeholders. Journal of Palliative Medicine. 2020;23(1):121-124. doi:10.1089/jpm.2019.0077

  3. Salmi L, Lum HD, Hayden A, Reblin M, Otis-Green S, Venechuk G, Morris MA, Griff M, Kwan BM. Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats. Neuro-Oncology Practice. 2020;7(6):676-684. doi:10.1093/nop/npaa043 🔓💥

  4. Feliciano J, Salmi L, Blotner C, Hayden A, Nduom E, Kwan B, Katz M, Claus E. Brain Tumor Discussions on Twitter (#BTSM): Social Network Analysis. J Med Internet Res 2020;22(10):e22005. doi: 10.2196/22005 🔓

  5. Salmi L, Dong ZJ, Yuh B, Walker J, DesRoches CM. Open Notes in Oncology: Patient versus Oncology Clinician Views. Cancer Cell. 2020;38(6):767-768. doi:10.1016/j.ccell.2020.09.016

  6. Salmi L, Brudnicki S, Isono M, Riggare S, Rodriguez C, Schaper LK, Walker J, Delbanco T. Six countries, six individuals: resourceful patients navigating medical records in Australia, Canada, Chile, Japan, Sweden and the USA. BMJ Open 2020;10:e037016. doi: 10.1136/bmjopen-2020-037016 🔓

  7. Rahimian M, Warner JL, Salmi L, Rosenbloom ST, Davis RB, Joyce RM. Open notes sounds great, but will a provider’s documentation change? An exploratory study of the effect of open notes on oncology documentation. JAMIA Open, Volume 4, Issue 3, July 2021, ooab051. doi: 10.1093/jamiaopen/ooab051 🔓

  8. DesRoches CM, Salmi L, Dong Z, Blease C. How do older patients with chronic conditions view reading open visit notes? J Am Geriatr Soc. 2021;1-10. doi: 10.1111/jgs.17406

  9. Turer RW, DesRoches CM, Salmi L, Helmer T, Rosenbloom ST. Patient Perceptions of Receiving COVID-19 Test Results via an Online Patient Portal: An Open Results Survey. Appl Clin Inform 2021; 12(04): 954-959. DOI: 10.1055/s-0041-1736221

  10. Blease C, Kharko A, Hägglund M, O’Neill S, Wachenheim Deborah, Salmi L, Harcourt K, Locher C, DesRoches DM, Torous J. The benefits and harms of open notes in Mental Health: A delphi survey of international experts. PLOS ONE. 2021;16(10). doi:10.1371/journal.pone.0258056 🔓

  11. Bell SK, Bourgeois F, DesRoches CM, Dong J, Harcourt K, Liu SK, Lowe E, McGaffigan P, Ngo LH, Novack SA, Ralston JD, Salmi L, Schrandt S, Sheridan S, Sokol-Hessner L, Thomas G, Thomas EJ. Filling a gap in safety metrics: development of a patient-centred framework to identify and categorise patient-reported breakdowns related to the diagnostic process in ambulatory care. BMJ Quality & Safety. Published Online First: 16 October 2021. doi: 10.1136/bmjqs-2021-013672 🔓

  12. Steitz BD, Turer RW, Lin CT, MacDonald S, Salmi L, Wright A, Lehmann CU, Langford K, McDonald SA, Reese TJ, Sternberg P, Chen Q, Rosenbloom ST, DesRoches CM. Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal. JAMA Netw Open. 2023;6(3):e233572. doi:10.1001/jamanetworkopen.2023.3572 🔓💥

Other peer-reviewed scholarship

  1. Petersen C, Austin RR, Backonja U, Campos H, Chung AE, Hekler EB, Hsueh PS, Kim KK, Pho A, Salmi L, Solomonides A. Citizen science to further precision medicine: from vision to implementation. JAMIA Open. 2019;3(1):2-8. doi:10.1093/jamiaopen/ooz06 🔓

  2. Blease C, Salmi L, DesRoches CM. Open notes in cancer care: coming soon to patients. The Lancet Oncology. 2020;21(9):1136-1138. doi:10.1016/s1470-2045(20)30423-x

  3. Blease C, Torous J, Kharko A, DesRoches CM, Harcourt K, O'Neill S, Salmi L, Wachenheim D, Hagglund M. Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts. JMIR Mental Health. 2021;8(4). doi:10.2196/27397 🔓

  4. Blease C, Salmi L, Rexhepi H, Hägglund M, DesRoches CM. Patients, clinicians and open notes: information blocking as a case of epistemic injustice. Journal of Medical Ethics. 2021. doi:10.1136/medethics-2021-107275 🔓

  5. Blease C, Salmi L, Hägglund M, Wachenheim D, DesRoches C. COVID-19 and Open Notes: A New Method to Enhance Patient Safety and Trust. JMIR Ment Health 2021;8(6):e29314. doi: 10.2196/29314 🔓

  6. Mansouri A, Hamidi N, Karmur B, Sperrazza S, Alexieva J, Salmi L, Zacharia BE, Nduom E, Cohen-Gadol AA, Rutka JT. Guidelines for optimal utilization of social media for brain tumor stakeholders. J Neurosurg 2021 July 23. doi: 10.3171/2020.11.JNS203226

  7. Salmi L, Blease C. A step-by-step guide to peer review: a template for patients and novice reviewers. BMJ Health & Care Informatics 2021;28:e100392. doi: 10.1136/bmjhci-2021-100392 🔓💥

  8. Blease C, McMillan B, Salmi L, Davidge G, Delbanco T. Adapting to transparent medical records: international experience with “open notes". BMJ 2022;379:e069861. doi: 10.1136/bmj-2021-069861 🔓

  9. Salmi, L. (2022). Deciding on my dimples. New England Journal of Medicine, 387(23), 2110–2111. doi: 10.1056/nejmp2210418 💥 (view an author copy ✏️)

Reviews, chapters, monographs and editorials

  1. Gilligan T, Salmi L, Enzinger A. Patient-Clinician Communication Is a Joint Creation: Working Together Toward Well-Being. American Society of Clinical Oncology Educational Book 2018 :38, 532-539. 🔓

Letters to the Editor

  1. Salmi L. Tomorrow's patients will demand greater transparency and openness. The BMJ. https://blogs.bmj.com/bmj/2017/04/07/liz-salmi-tomorrows-patients-will-demand-greater-transparency-and-openness/. Published April 12, 2017. Accessed May 18, 2021.

  2. Salmi L, Warner, JL. Measure Me, Don’t Judge Me: Patients as Objective Contributors to Performance Status Measurement. JCO Clinical Cancer Informatics. 2018:2, 1-4. doi: 10.1200/CCI.18.00029 🔓

  3. DesRoches CM, Salmi L. Harnessing the consumer movement. Annals of Internal Medicine. 2018;169(11):812. doi:10.7326/m18-2947

  4. Salmi L, Blease C, Hägglund M, Walker J, DesRoches CM. US policy requires immediate release of records to patients. BMJ. 2021. doi:10.1136/bmj.n426 🔓💥

  5. Salmi L, Mansouri SA, Taylor LP. New federal rule requires open notes: what do clinicians and patients need to know? Insights and suggestions from a neuro-oncologist, a neurosurgeon, and a person living with a brain tumor. Neuro-Oncology Practice. 2021 Apr 5;, npab014. doi: 10.1093/nop/npab014

  6. Blease C, DesRoches C, Hägglund M, Hayden A, Rexhepi H, Salmi L. Knowledge, power, and patients: The ethics of open notes. Journal of Medical Ethics blog. https://blogs.bmj.com/medical-ethics/2021/05/13/knowledge-power-and-patients-the-ethics-of-open-notes/. Published May 16, 2021. Accessed May 18, 2021.

  7. Bell SK, Bourgeois F, Liu S, Thomas EJ, Lowe E, Salmi L. Co-Development of OurDX—An Online Tool to Facilitate Patient and Family Engagement in the Diagnostic Process. The BMJ. https://blogs.bmj.com/bmj/2021/10/14/co-development-of-ourdx-an-online-tool-to-facilitate-patient-and-family-engagement-in-the-diagnostic-process. Published October 14, 2021. Accessed October 15, 2021.

current projects

Liz Salmi with mentor Cait DesRoches, DrPH

Liz Salmi, with amazing mentor Cait DesRoches, DrPH, in May 2022.

Funded

  • Answering the Call to Engage Patients and Families in Improving the Safety of Care. Department of Health and Human Service, Agency for Healthcare Quality and Research (AHRQ), R01, R01HS 27367-02 (PI: Sigall K. Bell)

  • Access, Exchange, and Use of Social Determinants of Health Data in Clinical Notes. Department of Health and Human Services, Solicitation Number: 75P00120R00158 (PI: Catherine DesRoches)

  • Engaging Family Caregivers through Shared Access to the Electronic Health Record: A Multi-Site Demonstration. The John A. Hartford Foundation, research grant #n/a (Co-PIs: Catherine DesRoches, Jennifer Wolff)

  • OPTimIzing engagement in discovery of molecular evolution of low grade glioma. (OPTIMUM). National Cancer Institute (NCI), U2C, 1U2CCA252979-01A1 (PIs: Elizabeth Claus; Bethany M. Kwan, Roel Verhaak) ($12,827,262)

  • National Brain Tumor Society (NBTS) Quality of Life (QoL) Institute. PCORI Engagement Award: Capacity Building (PI: Danielle Leach)

  • Preparing Medical Students and Their Teachers for Shared Medical Records. Macy Foundation (PIs: Katherine T. Johnston; Anita Vanka)

Unfunded

  • Patient Attitudes about Immediate access to test Results (PAIR). Co-Investigator (Co-PIs: Catherine DesRoches, Trent Rosenbloom)

Invited teaching & presentations

Select presentations only. Full academic CV available upon request.

National

  • 2016: e-Patient IGNITE Talk / Oral presentation *Selected abstract. Stanford Medicine X. Stanford, CA

  • 2016: Patient Perspectives on Patient-Driven Research / Invited panel session. Patient-Centered Scalable National Network for Effectiveness (pSCANNER) Annual Meeting, PCORnet (Patient-Centered Outcomes Research Institute). La Jolla, CA

  • 2017: OpenNotes: Improving Clinical Communication and Patient Engagement. Grand Rounds at Olive View-UCLA Medical Center, with Anshu Abhat, MD, MPH.Single presentation. Slymar, CA

  • 2017: Death and Bereavement in the Digital Age / Panel session *Selected abstract. Stanford Medicine X. Stanford, CA

  • 2017: Power to the People: Engaging Everyone in Advance Care Planning / Panel moderator *Selected abstract. Stanford Medicine X. Stanford, CA

  • 2017: Health Data: A relationship / Invited keynote. American Medical Informatics Association (AMIA) Annual Health Policy Invitational. Bethesda, MD

  • 2017: Notes, Nervous Clinicians, and People Power 2.0 / Invited keynote with Tom Delbanco, MD. Society for Participatory Medicine Annual Conference. Boston, MA

  • 2018: OpenNotes & Nervous Clinicians. Grand Rounds at University of California, San Diego School of Medicine, with Tom Delbanco, MD. Single presentation. San Diego, CA

  • 2018: Transparency in Patient Care / Invited keynote. Minnesota eHealth Summit, Minnesota Department of Health. Brooklyn Center, MN

  • 2018: Health Data: A Patient’s Perspective / Invited presentation. California Office of Statewide Health Planning and Development. Sacramento, CA

  • 2018: Patient–Clinician Communication Is a Two-Way Street: Driving in Parallel Toward Well-Being / Invited oral presentation. American Society for Clinical Oncology Annual Meeting. Chicago, IL

  • 2018: Give Me My Notes / Invited presentation. National Committee for Quality Assurance (NCQA) Quality Talks. Washington, D.C.

  • 2018. Patient Perspectives on Clinical Trials / Invited panel presentation. Society for Neuro-Oncology. New Orleans, LA

  • 2019: Flattening the Hierarchy: Patient-Clinician Innovations in Palliative Care. University of California, Davis School of Medicine. Single presentation. Sacramento, CA

  • 2019: Transparency In Healthcare, One Note at a Time / Panel session *Selected abstract. SXSW Interactive. Austin, TX

  • 2019: Why Access to Accurate Notes Matters to Patients. Institute for Healthcare Improvement (IHI) Patient Safety Congress, with Sigall Bell, MD. Single presentation. Houston, TX

  • 2019: OpenNotes Town Hall / Invited presentation. National Institutes of Health (NIH) Clinical Center. Bethesda, MD, virtual

  • 2019: OpenNotes in Oncology. City of Hope Comprehensive Cancer Center. Single presentation. Duarte, CA

  • 2019: Transparency In Healthcare, One Note at a Time / Invited panel. American Hospital Association Executive Forum. Boston, MA

  • 2019: Measuring and Improving the OpenNotes Experience / Oral presentation and panel session *Selected abstract. Epic Users Group Meeting. Verona, WI

  • 2019: “Over my dead body,” and other things heard at the front lines of culture change in medicine / Oral presentation *Selected abstract. Stanford Medicine X. Stanford, CA

  • 2019: The Disclosure Decision: How Well Would More Transparency Serve Your Institution and Patients? / Invited presentationHealthcare of Tomorrow conference, U.S. News & World Report. Washington, D.C.

  • 2019: Flipping Clinical Documentation on Its Head / Oral presentation and panel *Selected abstract. AMIA Annual Symposium. Washington, D.C.

  • 2019: How to Use Knowledge? Physicians and Patients Leading the Way / Invited presentation. Future Shock Series (American Medical Association). Chicago, IL

  • 2020: Making It Easier to Participate in Research: A Patient’s Perspective / Invited presentation. American Association for Cancer Research (AACR) Advancing Precision Medicine. San Diego, CA

  • 2020: A Decade of OpenNotes: How Transparency & Participation Can Transform Healthcare. Grand Rounds, Stanford Children’s Hospital, with Tom Delbanco, MD. Single presentation. Palo Alto, CA

  • 2020: Curiosity, One Note at a Time / Invited presenter. Apple. Cupertino, CA, virtual

  • 2020: Blurred Lines, Flattened Hierarchies: The Evolution of Patient Stakeholders to Investigators / Invited keynote. PCORI Annual Meeting. Washington, D.C., virtual

  • 2020: Advancing the Adoption of Patient Empowering Technology. The Patient, The Practitioner, and The Computer Conference. Brown Warren Alpert Medical School of Brown University, with Sue Woods, MD. Single presentation. Providence, RI, virtual

  • 2021: Patient & Clinician Perspectives on Open Notes. Vanderbilt University School of Medicine, with Sigall Bell, MD. Invited lecture. Nashville, TN, virtual

  • 2021: Evolution of the OpenNotes Movement: Past, Present and Future. Grand Rounds, Department of Medicine, University of California, San Francisco, with Tom Delbanco, MD. Invited lecture. San Francisco, CA, virtual

  • 2022: Patient & Clinician Perspectives on Open Notes / Invited presentation. Grand Rounds at Rutgers Robert Wood Johnson Medical School with Sigall Bell, MD. Newark, NJ, virtual

  • 2022: Direct Patient Engagement Design / Invited panelist. Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network Annual Meeting. The Ohio State University, National Cancer Institute. Columbus, OH

  • 2022: Education Day on CNS Cancer Survivorship: Equity in Survivorship / Invited presenter. 27th Annual Meeting, Society for Neuro-Oncology. Tampa, FL

  • 2023: Promoting Open Notes Using Communications Best Practices / Invited presenter. OpenNotes Learning Collaborative, NY State Health Foundation. New York City, NY, virtual

    2023: Managing the EHR Inbox / Invited presenter. University of California, San Francisco & the American Medical Association. San Francisco, CA

International

  • 2017: Global Health xChange / Invited panelist and group leader. Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship, Salzburg Global Seminar. Salzburg, Austria

  • 2021: Patient Access to Medical Records: The Patient's View. Epic Project UK. United Kingdom, virtual

  • 2021: How Patient Access to Information Will Change Care in Nursing / Invited keynote. Nursing Informatics International Conference 2021. Brisbane, Australia, virtual

  • 2021. Engaging With Patients to Expand Data for Cancer Research / Invited oral presentation. European Society for Medical Oncology 2021 Congress. Paris, France, virtual

  • 2022. A step-by-step guide to peer review: a template for patients and novice reviewers / Invited presentation with Charlotte Blease, PhD. BMJ Health & Care Informatics Journal Club. Scotland, virtual

  • 2023. Nothing About Us Without Us: Involving Patients & Care Partners in the Co-Design of Research & Its Dissemination / Invited keynote. MedInfo2023, MedInfo 2023, Australasian Institute of Digital Health (AIDH). Sydney, Australia