Medicine and Health Sciences Commons^™

A Helping Hand Out Of The River: Refugee Perspectives For Provider Engagement, Brian L. Isakson, Elizabeth R. Stein, Alexandra Olson, Destiny Waggoner, Jill Holtz, Sara Ali, Suha Amer, Martin Ndayisenga

Journal of Patient-Centered Research and Reviews

Purpose: A growing number of refugee groups are seeking care within the U.S. health care system for medical, psychological, and social needs. Research is limited in understanding refugee-specific conceptualizations of helping relationships and provider characteristics that improve interactions in health systems. This study aimed to identify provider characteristics that facilitate engagement and helpfulness in a refugee-specific population from refugee participant voices to inform future practices of health care clinics.

Methods: Semi-structured interviews with refugee participants were conducted to assess 1) experiences moving on from difficult experiences, 2) engagement with the health system, and 3) provider characteristics that facilitated engagement and …

Conference Proceedings: Select Abstracts Presented At 2023 Advocate Aurora Scientific Day

Journal of Patient-Centered Research and Reviews

This abstract supplement includes findings presented at the 49th annual Advocate Aurora Scientific Day on May 24, 2023. The Scientific Day symposium provides a virtual forum for the sharing of preliminary results from research and case studies conducted by faculty, fellows, residents, and other health professionals associated with Illinois-based Advocate Health Care and Wisconsin-based Aurora Health Care.

A Message To Our 2023 Peer Reviewers: Thank You

Journal of Patient-Centered Research and Reviews

As a multidisciplinary medical journal committed to a rigorous peer review process, the Journal of Patient-Centered Research and Reviews utilizes a diverse scholarly group of volunteer reviewers to evaluate the quality of and suggest improvements for original manuscript submissions. Each year, JPCRR publishes this citable acknowledgment as a means of expressing our editorial team’s sincere gratitude for the generous contributions made during the past 12 months by the below clinical, health research, and patient advocacy experts.

Previous Health Care Experiences’ Influence On Health Care Perceptions Among Residents In Six Homeless Shelters In Seattle, Washington, July–October 2021, Ashley A. Meehan, Sarah N. Cox, Nicholas B. Thuo, Julia H. Rogers, Amy C. Link, Miguel A. Martinez, Natalie K. Lo, Brian J. Manns, Melissa A. Rolfes, Eric J. Chow, Helen Y. Chu, Emily Mosites, Morhaf Al Achkar

Journal of Patient-Centered Research and Reviews

Purpose: The study purpose was to learn and describe 1) where homeless shelter residents receive health care, 2) what contributes to positive or negative health care experiences among shelter residents, and 3) shelter resident perceptions toward health care.

Methods: Semi-structured interviews (SSIs) utilizing purposive sampling and focus group discussions (FGDs) utilizing convenience sampling were conducted at 6 homeless shelters in Seattle-King County, Washington, during July–October 2021. All residents (age ≥ 18) were eligible to participate. SSIs were conducted with 25 residents, and 8 FGDs were held. Thematic analysis was conducted using Dedoose.

Results: Participants received health care …

Leveraging The Strength Of Collaboration In Rapidly Changing Times: The 29th Annual Conference Of The Health Care Systems Research Network, Michael A. Horberg, Suzanne Simons

Journal of Patient-Centered Research and Reviews

On February 21, 2023, the 29th annual conference of the Health Care Systems Research Network (HCSRN) kicked off at the Sheraton Downtown Denver with more than 320 participants from 20 HCSRN member institutions. Attendees gathered, in person, to reconnect and network during the 3-day conference, which featured the theme Leveraging the Power of the Network in Rapidly Changing Times. This paper highlights takeaways from the conference’s plenary sessions, panel discussions, and abstract presentations.

Abstracts From The 2023 Health Care Systems Research Network (Hcsrn) Annual Conference, Denver, Colorado

Journal of Patient-Centered Research and Reviews

The Health Care Systems Research Network (HCSRN) is comprised of 20 learning health systems with embedded population-based research units. The network’s annual conference serves as a forum for research teams from member institutions to disseminate project findings, explore scientific collaborations, and share insights about conducting research in real-world care delivery settings. Abstracts presented at HCSRN 2023 are published in this issue supplement of Journal of Patient-Centered Research and Reviews, the journal of record for HCSRN’s annual conference proceedings.

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 …

Understanding Quality Of Life In Patients With Acute Leukemia, A Global Survey, Zack Pemberton-Whiteley, Samantha Nier, Jan Geissler, Sophie Wintrich, Bregje Verhoeven, Rita O. Christensen, Sam Salek, Esther Natalie Oliva, Tatyana Ionova, Jennie Bradley

Journal of Patient-Centered Research and Reviews

Purpose: The Acute Leukemia Advocates Network (ALAN) sought to determine which factors are most associated with poor quality of life (QoL) in patients with acute leukemia and to determine key issues and unmet needs through administration of an online survey distributed worldwide via partner patient organizations.

Methods: ALAN developed a questionnaire informed by literature review and based extensively on the hematological malignancy-specific patient-reported outcomes (HM-PRO) measure to assess the impact of acute leukemia on QoL and its relationships with patients’ demographics, disease state, disease impact, and support from health care professionals. Univariate and multivariable statistical analysis was used to investigate …