Spring Newsletter

Governing Board Chair, Michael A. Horberg, MD, MAS, FACP, FIDSA, Associate Medical Director, Kaiser Permanente Mid-Atlantic Permanente Medical Group and Executive Director,

Mid-Atlantic Permanente Research Institute

and

Suzanne Simons, MS, Interim Executive Director

On February 21, the 29^th Annual Conference of the HCSRN kicked off at the Sheraton Downtown Denver with more than 320 participants from 20 HCSRN member institutions. Attendees were happy to gather again, in person, to reconnect and network during the two and a half-day conference.

Claudia Steiner, MD, MPH, Executive Director, Institute for Health Research, Kaiser Permanent Colorado (KPCO), and Professor, Health Systems Science, Kaiser Permanente School of Medicine welcomed the attendees to the Mile High City. Although the weather was cold, the warm hospitality extended by Claudia and her team set the perfect tone for the meeting.

Abdul Shaikh, PhD, MSHc, Global Leader for Population Health Analytics for Amazon Web Services provided the opening plenary session with his presentation, Leveraging the Power of the HCSRN Network to Accelerate Progress on Health Equity. Using examples from his career spanning government, academia, and industry—including HCSRN member organizations, he shared insights and learnings from new initiatives and approaches to accelerate progress on health equity for clinical translational research.

Each day throughout the conference, attendees were encouraged to take advantage of network opportunities during breakfast and lunch, ancillary meetings, informal gatherings, the opening reception, and poster sessions.

Governing Board Chair, Michael Horberg, MD, MAS, shared many exciting updates during the State of the Network (SON) address on Wednesday, February 22. Recognizing the visionary leaders who founded HCSRN in 1994, Dr. Horberg also expressed his deep appreciation for the leadership of Immediate Past Chair, Robert Greenlee, PhD, MPH. Last year, Dr. Greenlee orchestrated the transition of HCSRN to Capitol Hill Management Services, headquartered in Albany, NY. Now a designated 501(c)3 non-profit organization, HCSRN has increased capacity and resources to further the HCSRN mission.

For the remainder of 2023, the organizational focus will include:

• Engagement => Value for participation
• Collaboration => Funded opportunities
• Sustainability => Organizational Transformation/New Central Team
• VDW operations => Working group leads and new data development

The HQ³: A Bridge Plan to Our Future was reviewed. This transition plan ensures that HCSRN accomplishes everything it should during the conversion from an unincorporated network to a professional 501(c)3 membership association (our research institutions) while providing quality membership services, programming, and networking opportunities. Dr. Horberg shared the 2023 Budgeted Revenue and Expense numbers which demonstrated a nearly $25,000 surplus, to be used for furthering the mission and goals of the organization.

Ingrid Binswanger, MD, MPH, MS

Senior Clinician Investigator

Kaiser Permanente Colorado

The Association Between Buprenorphine Treatment Duration and Mortality: A Multi-

Site Cohort Study of People Who Discontinued Treatment

Collaborative Sites included in the study:

• Kaiser Permanente Colorado
• Kaiser Permanente Southern California
• Kaiser Permanente Northern California
• Kaiser Permanente Mid-Atlantic
• Henry Ford Health Systems
• Geisinger
• UMass/Meyers

Apoorva Pradhan, MD, MPH

Staff Scientist

Geisinger

Abstract

Impact of a Multi-Faceted Best Practice Alert among Patients with Headaches seen in Primary Care

The Governing Board of the Health Care Systems Research Network (HCSRN) has undergone some change in the last few months. HCSRN bid farewell to Lois Lamerato, PhD and Alison Galbraith, MD, MPH. Dr. Lamerato represented the Henry Ford Health System (HFHS) and joined the Governing Board in 2012. She served as the liaison to the Virtual Data Warehouse from 2012 -2022. During her tenure, she worked on the very first VDW content areas-Tumor and Enrollment and served as the scientific lead for the VDW Tumor work group for nearly 12 years. Lois is enjoying semi-retirement since she left HFHS at the end of year. Dr. Galbraith accepted a new position as the Chief of the Division of Health Services Research in the Pediatrics Department at Boston Medical Center, and left Harvard Pilgrim January 31, 2023. Alison had served on the HCSRN Board since 2019 and led HPHC’s participation as a site in the HCSRN’s ACTION IV application.

The Board expresses deep gratitude and appreciation to Lois and Alison for their dedication and leadership.

Michael Goodman, MD, MPH

Professor of Epidemiology

Director, MD/MPH program

Emory University School of Public Health

This article is based on Dr. Goodman’s presentation at the VIG Fall Midyear Meeting held on October 18, 2022 in Atlanta.

Transgender people are a large and diverse group that includes individuals whose assigned sex does not match their gender identity. Many transgender people may not self-identify based on binary definitions of man or woman; however, a person whose gender identity differs from male sex assigned at birth is often referred to as transfeminine and a person whose gender identity differs from female sex assigned at birth is referred to as transmasculine.

Transgender individuals sometimes seek medical gender affirmation, which may involve administration of hormone therapy, surgical changes of the chest and genitalia, or other procedures aimed at altering secondary sex characteristics. Although several medical organizations have issued recommendations for appropriate care of transgender patients, many unresolved issues in transgender health remain. Critical research priorities in transgender health include, for example, identification of the best ways to alleviate gender dysphoria (the feeling of distress when assigned sex does not match gender identity) and investigation of the most appropriate methods of monitoring transgender persons who receive hormone therapy. Addressing these research priorities requires high-quality longitudinal data on large numbers of transmasculine and transfeminine people followed for sufficient period of time. These considerations motivated the design of the “Study of Transition, Outcomes & Gender (STRONG)” a large cohort nested within integrated health systems.

STRONG initially was established in 2014 as a cohort of 6,456 transgender people ascertained from electronic health records of three Kaiser Permanente sites in Georgia and in Northern and Southern California. Eligible cohort members were identified using a combination of diagnostic codes and presence of confirmatory clinical notes. Each eligible STRONG participant was also categorized as transfeminine or transmasculine based on relevant diagnoses, procedures as well as evidence of in the text. Up to 10 cisgender male and 10 cisgender female Kaiser Permanente plan members were matched to each transgender participant on year of birth, race/ethnicity, study site, and enrollment year. To date the STRONG study provided data for over 30 publications covering a wide range of important transgender health issues.

More recently we expanded the cohort, which now includes nearly 40,000 transgender persons matched with 800,000 cisgender referents identified across four different integrated health systems. The expanded STRONG cohort provides data for a series of new analyses aimed at investigating occurrence of acute cardiovascular events in relation to gender affirming hormone therapy, examine mental health status of transgender people with specific focus on suicide attempts and cognitive decline, and characterize changes in clinical health indicators such as serum lipids, liver enzyme levels body mass index and bone density in relation to HT dose and duration.

Although the expanded cohort offers a plethora of new research opportunities, the greatly increased volume of the available data also presents a number of new challenges. Some research questions require new methods of systematically identifying patients who underwent diagnostic workup or treatment outside of the integrated health systems. For example, some genetic reports are only available as scanned files and converting information in these reports into electronic data may be time and resource-consuming. One of critical elements of gender affirming care is monitoring of hormone levels. Adding hormone levels to the list of variables available in the Virtual Data Warehouse will greatly facilitate research efforts. As the number of participants increased it has become impossible to rely on human review of clinical notes to ascertain and characterize study participants. Use of Natural Language Processing programs holds great promise; however, it is important to ensure that these programs can be uniformly deployed and tested across sites. These challenges can be viewed as barriers as well as opportunities. Overcoming these challenges will greatly advance research methodology and, if so, place integrated health systems in a unique position of providing much needed information about transgender health as well as health of other hard-to-reach understudied populations.