Health Information Technology Commons^™

Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar For Study Of Rare Disease Populations, Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh

Journal of Patient-Centered Research and Reviews

Purpose: Rare conditions are often poorly understood, creating barriers in determining the value treatments can provide. This study explored barriers and facilitators to personal health data sharing among those with one particular group of rare hematologic disorders, ie, sickle cell disorder (SCD) and its variants.

Methods: A single online focus group among those > 18 years of age and living with SCD was conducted. Participants (N = 25) were recruited through a United Kingdom-based SCD charity. Discussions were transcribed verbatim, with data therein analyzed using inductive thematic analysis.

Results: Five primary motivators for sharing health data were identified: improving awareness; knowing …

Partnering To Advance Health Equity And A Welcome Opportunity To Gather: Proceedings From The 28th Annual Conference Of The Health Care Systems Research Network, Robert T. Greenlee

Journal of Patient-Centered Research and Reviews

In April 2022, the Health Care Systems Research Network (HCSRN) — a consortium of 20 research institutions affiliated with large health systems spread across the United States (and one in Israel) — held its 28th annual conference in Pasadena, California, with 275 researchers, health care colleagues, and external academic partners in attendance. With a conference theme of “Promoting Collaboration and Partnerships to Advance Health Equity,” the scientific program was assembled by a multisite planning committee with input from representatives of informal local host Kaiser Permanente Southern California. Objectives of the annual conference are to showcase scientific findings from HCSRN projects …

Virtual Behavioral Health Treatment Satisfaction And Outcomes Across Time, Mindy R. Waite, Sara Diab, James Adefisoye

Journal of Patient-Centered Research and Reviews

Purpose: The COVID-19 pandemic continues to have major and long-lasting impacts on health care delivery and mental health. As health care shifted to telehealth, legislation was adjusted to expand telehealth allowances, creating a unique opportunity to elucidate outcomes. The aim of this study was to assess long-term patient and clinician satisfaction and outcomes with virtual behavioral health.

Methods: Data were obtained over 16 months from surveys to patients and clinicians receiving/providing virtual treatment. Outcomes data also were collected from medical records of adults receiving in-person and virtual behavioral health treatment. Data were summarized using descriptive statistics. Groups were compared using …

Can Variables From The Electronic Health Record Identify Delirium At Bedside?, Ariba Khan, Kayla Heslin, Michelle Simpson, Michael L. Malone

Journal of Patient-Centered Research and Reviews

Delirium, a common and serious disorder in older hospitalized patients, remains underrecognized. While several delirium predictive models have been developed, only a handful have focused on electronic health record (EHR) data. This prospective cohort study of older inpatients (≥ 65 years old) aimed to determine if variables within our health system’s EHR could be used to identify delirium among hospitalized patients at the bedside. Trained researchers screened daily for delirium using the 3-minute diagnostic Confusion Assessment Method (3D-CAM). Patient demographic and clinical variables were extracted from the EHR. Among 408 participants, mean age was 75 years, 60.8% were female, and …

Abstracts From The 26th Annual Health Care Systems Research Network Conference, April 8–10, 2020

Journal of Patient-Centered Research and Reviews

The Health Care Systems Research Network (HCSRN) is made up of community-based care delivery systems with a shared mission to improve health and health care through research. The network’s annual conference serves as a forum for attendees to disseminate study findings, stimulate collaborations, and share insights about conducting research in real-world care settings. Although this year’s live conference was cancelled to help slow the spread of COVID-19, the oral and poster abstracts accepted for presentation at HCSRN 2020 are published in this open access supplement to Volume 7, Issue 1 of the Journal of Patient-Centered Research and Reviews, the …

Abstracts From The 24th Annual Health Care Systems Research Network Conference, April 11–13, 2018, Minneapolis, Minnesota

Journal of Patient-Centered Research and Reviews

Founded in 1994, the Health Care Systems Research Network (HCSRN) is a consortium of 18 research centers that are housed in community-based health systems. The organization's annual conference serves as a venue for research teams to disseminate scientific findings, stimulate new collaborations, and share insights about conducting research in real-world care-delivery settings. Abstracts accepted for presentation at HCSRN 2018 are published within this supplement of the Journal of Patient-Centered Research and Reviews.