Patients’ Interests and Barriers to Research Partnerships Within an Academic Health System

Abstract

This cross-sectional study examines patients’ willingness to participate in research partnerships in an academic health system as well as barriers and facilitators to such partnerships.

Introduction

Including patients as collaborative research partners is best practice.^1,2,3 However, implementation remains inconsistent and would benefit from quantitative data describing patients’ interests. This study quantifies patients’ willingness to partner, activities of interest, barriers, and facilitators for engagement.

Methods

We distributed a cross-sectional survey (November 2024-August 2025) using a modified Dillman approach⁴ to a stratified random sample of 2001 adult Michigan Medicine patients identified from electronic health records (EHRs) with 1 or more past-year appointments and English as their preferred language. Existing EHR race and ethnicity classifications were used to define sampling strata and support broad representation among invitees: 20% African American or Black, 10% Asian, 10% Hispanic, 10% Middle Eastern or North African, and 50% other. Items assessed self-reported age, sex, race and ethnicity, educational level, nearest health care site travel time, prior research participation or partnership, and partnering likelihood. Questions about interest in different research activities, barriers, facilitators, compensation, duration and timing, and invitation method had “check all that apply” response options. Health literacy was assessed using a 1-item⁵ and trust in medical researchers a 4-item scale (range, 4-20; higher scores indicate greater trust).⁶ Descriptive statistics summarized study variables. Responder and nonresponder differences were assessed using unpaired, 2-tailed t tests or χ² tests. Logistic regression examined factors associated with interest in higher (≥1 h/wk) vs lower (≤1 h/mo) time commitment for virtual partnership. Age- and sex-adjusted odds ratios (ORs) were considered statistically significant when 95% CIs did not include 1 (analyses conducted using StataNow/SE19.5 [StataCorp]). The University of Michigan Institutional Review Board determined that this study was exempt. Participants received a cover letter and information sheet describing the voluntary nature of the study; survey completion and return indicated agreement to participate, with data deidentified before analysis. Reporting followed the STROBE guideline.

Results

Of 2001 patients, 1665 were response eligible (319 surveys returned to sender or incorrect address, 16 returned by family of deceased patients, and 1 returned noting patient was incarcerated) and 409 (24.6%) responded. Responders were older than nonresponders (mean [SD] age, 51.2 [19.4] vs 46.1 [19.3] years) but not significantly different by sex, race, or ethnicity. Of responders, 261 (63.8%; median [IQR] age, 51 [35-66] years; 152 [58.2%] female and 103 [39.5%] male; 49 [18.8%] African American or Black, 25 [9.6%] Asian alone, 16 [6.1%] Hispanic or Latino alone, 113 [43.3%] White alone, 31 [11.9%] multiracial and/or multiethnic, 6 [2.3%] prefer not to answer, and 6 [2.3%] missing) were moderately (n = 151) or extremely (n = 110) likely to partner with researchers (Table). Most (229 [87.7%]) had adequate health literacy. Mean (SD) trust in medical researchers was 14.2 (2.7) (range, 6-20).

Table. Demographics of Patients Interested in Partnering With Researchers.

Characteristic	No. (%) of patients interested in partnershipsa (N = 261)
Age
Median (IQR), y	51 (35-66)
Missing	6 (2.3)
Sex
Female	152 (58.2)
Male	103 (39.5)
Prefer not to answer	1 (0.4)
Missing	5 (1.9)
Race and ethnicity
African American or Black alone	49 (18.8)
Asian alone	25 (9.6)
Hispanic or Latino alone	16 (6.1)
Middle Eastern or North African alone	15 (5.8)
White alone	113 (43.3)
Multiracial and/or multiethnic	31 (11.9)
Prefer not to answer	6 (2.3)
Missing	6 (2.3)
Highest level of education completed
Some high school, high school graduate, or GED	39 (15.0)
Some college	77 (29.5)
College graduate (bachelor’s degree)	69 (26.4)
Graduate degree	74 (28.4)
Missing	2 (0.8)
Prior research study participant
Yes	128 (49.0)
No	129 (49.4)
Missing	4 (1.5)
Prior research patient partner experience
Yes	44 (16.9)
No	192 (73.6)
Missing	25 (9.6)
Travel time to nearest health care site
Median (IQR) [range], min	34 (15-60) [0-720]
Missing	11 (4.2)

Abbreviation: GED, General Educational Development.

^a Unless otherwise indicated.

Activity of greatest interest was sharing personal health care experiences (214 [82.0%]). Most common barrier was transportation (149 [57.1%]); leading facilitator was personal experience of the topic (200 [76.6%]) (Figure). Of compensation options (cash or gift card, verbal praise, meal, training opportunities, token gifts, or coauthorship), cash or gift card was most selected (210 [80.5%]). Regarding timing (standard work hours, after-work hours during week, weekend or flexible), flexible hours was most selected (172 [65.9%]). Regarding invitation (physician, website, email, mail, text, or telephone), email was most selected (171 [65.5%]).

Figure. Patient Interests, Perceived Barriers, and Facilitators for Research Partnership Activities.

Of responders, 104 (41.0%) preferred a higher time commitment. Greater trust in medical researchers was associated with this outcome, with each 1-point increase in trust score associated with 10% higher odds (OR, 1.10; 95% CI, 1.00-1.22). Other factors associated with interest in higher time commitment were interest in assisting in deciding on topics (OR, 1.90; 95% CI, 1.14-3.17), problem-solving during study conduct (OR, 1.90; 95% CI, 1.14-3.18), helping with recruitment (OR, 1.82; 95% CI, 1.06-3.14), sharing study findings (OR, 2.37; 95% CI, 1.31-4.26), preferring to partner during standard work hours (OR, 2.17; 95% CI, 1.27-3.71), endorsing no barriers (OR, 4.58; 95% CI, 1.52-13.83), and preferring email (OR, 2.64; 95% CI, 1.49-4.66) or text (OR, 2.26; 95% CI 1.33-3.82) invitation. Selecting life responsibilities as a barrier was associated with lower odds of higher time commitment interest (OR, 0.53; 95% CI, 0.30-0.92). Demographics, health literacy, research participation or partnership experience, and facilitators were not associated with time commitment preference.

Discussion

These quantitative data complement previous qualitative literature.⁷ Of responders, 63.8% were likely to partner with researchers, with sharing personal health care experiences of most interest, suggesting narrative medicine techniques may support engagement.⁸ The higher time commitment preference and greater trust in medical researchers association is consistent with frameworks foregrounding respect and clear expectation-setting.^9,10 Study limitations include modest response rate and predominantly English-speaking sample (reflecting Michigan Medicine’s population; approximately 93% prefer English), primarily with adequate health literacy. Responder vs nonresponder differences by educational level, health literacy, prior research participation, and health insurance remain unknown. To align with contemporary guidance, institutions should invest in structures to support patient partnerships, prioritizing patient interests, providing compensation, and accommodating varying time commitments.

Supplement.

Data Sharing Statement