Q-HER Lab Publications and Presentations

Grob R, Nembhard I. How does sharing patient feedback improve care quality? Presented at: Care Opinion Spring Conference: Listening With Purpose and Taking Meaningful Action; May 29, 2025; virtual.

Evered JA, Grob R. Catalyst films to inspire healthcare change: sharing the medication for opioid use disorder. Presented at: RHeSUS Program Lunch and Learn Series; University of Wisconsin-Madison; December 16, 2024; virtual.

Shaller D, Quigley D, Lee Y, Grob R, Bakdash J. How patient narratives can support your patient experience strategy. Presented at: AHRQ Webinar; December 10, 2024; webcast.

Grob R. Eliciting patient narratives for insights about identity in the diagnostic process. Presented at: National Academies of Medicine Workshop on Advancing Equity in Diagnostic Excellence to Reduce Health Disparities; September 24, 2024; Washington, DC.

Grob R, Montgomery, T. The overlooked role of physician trust in patients. Presented at: Trust Conversation Series; May 18, 2023; Webinar.

Grob R. What patients are saying about cancer, genetics, and genomics. Presented at: National Patient Advocate Foundation Policy Forum; May 15, 2019; Washington, DC.

Grob R. Qualitative research: robust but marginalized. Presented at: The Hastings Center, Looking for the Psychosocial Impacts of Genomic Information; February 27, 2018; New York, NY.

Grob R, Warren B, Cottrell E, Grevious N, Knight S, Schlesinger M, Clegg Smith K, Pandhi N. ‘Those boxes do not hold me’: using narrative health experience research to learn from patients and care partners beyond surveys. Patient Exp. J. 2025;12(2):4-8. doi: 10.35680/2372-0247.2022.

Ziebland S, Grob R, Schlesinger M. Polyphonic perspectives on health and care: reflections from two decades of the DIPEx project. J Health Serv Res Policy. 2021; 26(2):133-140. doi: 10.1177/1355819620948909.

Matta S, Lee YH, Grob R, Schlesinger M, Nembhard IM. The perceived usefulness of patient narrative feedback in primary care settings. Patient Exp. J. 2024;11(2):13-26. doi: 10.35680/ 2372-0247.

Grob R, Lee YSH, Shaller D, Warne E, Matta S, Schlesinger M, Nembhard IM. “Nothing is more powerful than words:” how patient experience narratives enable improvement. Qual Manag Health Care. 2024;33(3):149-159. doi: 10.1097/QMH.0000000000000477.

Shaller D, Nembhard I, Matta S, Grob R, Lee Y, Schlesinger M. A novel method of patient narrative feedback reporting and learning: results from a field experiment. Acad Manag Proc. 2023, https://doi.org/10.5465/AMPROC.2023.17988abstract

Nembhard I, Matta S, Shaller D, Lee Y, Grob R, Schlesinger M. Learning from patients: the impact of using patient narratives on patient experience scores. Health Care Manage Rev. 2023;(1):19710. doi: 10.5465/AMPROC.2023.225bp.

Shaller D, Nembhard I, Matta S, Grob R, Lee Y, Warne E, Evans R, Dicello D, Colon M, Polanco A, Schlesinger M. Assessing an innovative method to promote learning from patient narratives: findings from a field experiment in ambulatory care. Health Serv Res. 2023. doi: 10.1111/1475-6773.14245.

Martino SC, Reynolds KA, Grob R, Palimaru AI, Zelazny S, Slaughter ME, Rybowski L, Parker AM, Toomey SL, Schuster MA, Schlesinger M. Evaluation of a protocol for eliciting narrative accounts of pediatric inpatient experiences of care. Health Serv Res. 2023; 58(2):271-281. doi: 10.1111/1475-6773.14134.

Lee Y, Grob R, Nembhard I, Shaller D, and Schlesinger M. A new frontier: patients as sources of creative ideas for health care improvement. Acad Manag Proc. 2022. doi: 10.5465/AMBPP.2022.277

Grob R, Schlesinger M, Barre LR, Bardach N, Lagu T, Shaller D, Parker AM, Martino SC, Finucane ML, Cerully JL, Palimaru A. What words convey: the potential for patient narratives to inform quality improvement. Milbank Q. 2019 Mar;97(1):176-227. doi: 10.1111/1468-0009.12374.

Schlesinger M, Grob R, Shaller D, Martino SC, Parker AM, Rybowski L, Finucane ML, Cerully JL. A rigorous approach to large-scale elicitation and analysis of patient narratives. Med Care Res Rev. 2020;77(5):416-427. doi: 10.1177/1077558718803859.

Smith KC, Grob R, McCullough M, May B, Warne E, Matchette A, Visvanathan K. A qualitative feasibility study of a prototype patient-centered video intervention to increase uptake of cancer genetic testing among Black Americans. Pilot Feasibility Stud. 2024 April;10(1):62. doi: 10.1186/s40814-024-01482-8.

Grob R, Lee YH, Shaller D, Warne E, Matta S, Schlesinger M, Nembhard IM. Nothing is more powerful than words: how patient experience narratives enable improvement. Qual Manag Health Care. 2024;33(3):149-159. doi: 10.1097/QMH.0000000000000477

Davis S, Pandhi N, Warren B, Grevious N, Crowder M, Ingersoll H, Perry E, Sussman A, Grob R. Developing catalyst films of health experiences: an analysis of a robust multi-stakeholder involvement journey. Res Involv Engagem. 2022;8(1):34. doi: 10.1186/s40900-022-00369-3.

Pandhi N, Gaines M, Deci D, Schlesinger M, Culp C, Karp Z, Legler C, Grob R. Broadening medical students’ exposure to the range of illness experiences: a pilot curriculum focused on depression education. Acad Med. 2020;95(1):72-76. doi: 10.1097/ACM.0000000000002893.

Schlesinger M, Grob R, Shaller D. Using patient-reported information to improve clinical practice. Health Serv Res. 2015;50 (Suppl 2):2116-2154. doi: 10.1111/1475-6773.12420.

Lee YS, Grob R, Nembhard JG, Shaller D, Schlesinger M. Leveraging patients’ creative ideas for innovation in health care. Milbank Q. Published online December 2023. https://doi.org/10.1111/1468-0009.12682

Lee Y, Grob R, Nembhard I, Shaller D, Schlesinger M. A new frontier: patients as sources of creative ideas for health care improvement. Acad Manag Proc. 2022; 2022:277 https://doi.org/10.5465/AMBPP.2022.277

Grob R, Gleason K, McLean P, McGraw S, Solomon M, Joffe S. Patients’ roles in governance of learning: results from a qualitative study of 16 learning healthcare systems. Learn Health Syst. 2021;6(1):e10269. doi: 10.1002/lrh2.10269.

Grob R, Schlesinger M, Barre LR, Bardach N, Lagu T, Shaller D, Parker AM, Martino SC, Finucane ML, Cerully JL, Palimaru A. What words convey: the potential for patient narratives to inform quality improvement. Milbank Q. 2019;97(1):176-227. doi: 10.1111/1468-0009.12374.

Ziebland S, Sakuma Sato R, Grob R, Dowrick A, Navarro Dias de Souza AR, Spitale G, Schlesinger M. Cross country analysis of qualitative interviews: Developing a method, a community and an understanding of how COVID has been experienced around the globe. SSM Qual Res Health. Published online January 1, 2024. doi:10.1016/j.ssmqr.2024.100396

Grob R. Qualitative research on expanded prenatal and newborn screening: robust but marginalized. Hastings Cent Rep. 2019;49 (Suppl 1):S72-S81. doi: 10.1002/hast.1019.

Grob R, Roberts S, Timmermans S. Families’ experiences with newborn screening: a critical source of evidence. Hastings Cent Rep 2018;48(4 Suppl): S29-S31. DOI: 10.1002/hast.881

Finucane ML, Martino SC, Parker AM, Schlesinger M, Grob R, Cerully JL, Rybowski L, Shaller D. A framework for conceptualizing how narratives from health-care consumers might improve or impede the use of information about provider quality. Patient Exp J. 2018;5(1):15-26. doi: 10.35680/ 2372-0247.1229.

Grob R, Schlesinger M. When public and private narratives diverge: experiences with newborn screening in the USA. In: Hinton L, Locock L, Ziebland S, Lucius-Hoene G, Holmberg C, Meyer T, eds. Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford University Press; 2018. doi: doi:10.1093/med/9780198806660.003.0023

Grob R. Schlesinger M. Parker AM, Shaller D, Barre LR, Martino SC, Finucane ML, Rybowski L, Cerully JL. Breaking narrative ground: innovative methods for rigorously eliciting and assessing patient narratives. Health Serv Res. 2016; 51: 1248-1272. https://doi.org/10.1111/1475-6773.12503

Schlesinger M, Grob R, Shaller D, Martino SC, Parker AM, Finucane ML, Cerully JL, Rybowski L. Taking patients’ narratives about clinicians from anecdote to science. N Engl J Med. 2015;373(7):675-679. doi: 10.1056/NEJMsb1502361.

Grob R, Evered J. What is emerging for qualitative research in the COVID-19 emergency? A rejoinder to “Collecting qualitative data during a pandemic” by David Silverman. Cult Anal Med. 2021;17(1):85-87. doi:10.1558/cam.19752

Alkureishi MA, Lee WW, Lenti G, Choo ZY, Benning-Shorb J, Grob R, Gaines ME, Frankel R. Low-tech high-value(s) care: no patient left behind. Perm J. 2021;25:21.083. doi: 10.7812/TPP/21.083.

Schlesinger M, Grob R, Shaller D, Martino SC, Parker AM, Finucane ML, Cerully JL, Rybowski L. Taking patients’ narratives about clinicians from anecdote to science. N Engl J Med. 2015;373(7):675-679. doi: 10.1056/NEJMsb1502361.

Grob R. The heart of patient-centered care. J Health Polit Policy Law. 2013;38(2):457-465. doi: 10.1215/03616878-1966406.

McDonald KM, Gleason KT, Grob R, Yuan CT, Dhingra I, Evered JA, Warne E, Schlesinger M. Exploring sociodemographic disparities in diagnostic problems and mistakes in the quest for diagnostic equity: insights from a national survey of patient experiences. Front Public Health. 2025;13. doi: 10.3389/fpubh.2025.1444005

Gleason KT, Yuan CT, Haskell H, Anderson M, Evered JA, McDonald K. Patient-informed exploration of the aftermath of a diagnostic problem or mistake based on results of a national survey. Front Health Serv. 2024;4. doi:10.3389/frhs.2024.1474073.

Whitney C, Evered J. Dimensionalizing data: using the in vivo, collaborative, proliferative, metaphorical, and graphic modes of dimensionalization as techniques for qualitative analysis. Int J Qual Methods. 2025;24. doi:10.1177/16094069251315396

Husted M, Dowrick A, Porter R, Velo Higueras M, Whitmore C, Evered J, Kennedy M, Scott SD. Imposter participants in synchronous qualitative research: a systematic scoping review. Int J Qual Methods. 2025;24. doi:10.1177/16094069251342542

Whitney C, Evered JA, Patrick B, Lee G. “Whose um voice is it anyway?” Leveraging “thick transcription” to promote inclusion in qualitative research through transcript alignment. Int J Qual Methods. Published online June 21, 2024. doi:10.1177/16094069241256548

Whitney C, Evered JA. The qualitative distress protocol: a participant-centered tool for navigating distress during data collection. Int J Qual Methods. Published online September 29, 2022. doi:10.1177/16094069221110317

Schlesinger M, Rybowski L, Shaller D, Marino SC, Parler AM, Grob R, Finucane ML, Cerully JL. Americans’ growing exposure to clinician quality information: insights and implications. Health Aff (Millwood). 2019;38(3): Pages 374-382. doi: 10.1377/hlthaff.2018.05006

Cerully JL, Parker AM, Rybowski L, Schlesinger M, Shaller D, Grob R, Finucane ML, Martino SC. Improving patients’ choice of clinician by including roll-up measures in public healthcare quality reports: an online experiment. J Gen Intern Med. 2019;34(2):243-249. doi: 10.1007/s11606-018-4725-y.

Finucane ML, Martino SC, Parker AM, Schlesinger M, Grob R, Cerully JL, Rybowski L, Shaller D. A framework for conceptualizing how narratives from health-care consumers might improve or impede the use of information about provider quality. Patient Exp J. 2018;5(1):15-26. doi: 10.35680/2372-0247.1229.

Martino SC, Grob R, Davis S, et al. Choosing doctors wisely: can assisted choice enhance patients’ selection of clinicians? Med Care Res Rev. 2019;76(5):572-596. doi:10.1177/1077558717743822

Cerully JL, Martino SC, Rybowski L, Finucane ML, Grob R, Parker AM, Schlesinger M, Shaller D, Martsolf G. Using “roll-up” measures in healthcare quality reports: perspectives of report sponsors and national alliances. Am J Manag Care. 2017;23(6):e202-e207.

Martino SC, Shaller D, Schlesinger M, Parker AM, Rybowski L, Grob R, Cerully JL, Finucane ML. CAHPS and comments: how closed-ended survey questions and narrative accounts interact in the assessment of patient experience. J Patient Exp. 2017;4(1):37-45. doi: 10.1177/2374373516685940.

Grob R, Schlesinger M, Parker AM, Shaller D, Barre LR, Martino SC, Finucane ML, Rybowski L, Cerully JL. Breaking narrative ground: innovative methods for rigorously eliciting and assessing patient narratives. Health Serv Res. 2016;51 (Suppl 2):1248-1272. doi: 10.1111/1475-6773.12503.

Grob R, Schlesinger M. Educating, enrolling, and engaging: the state of marketplace consumer assistance under the Affordable Care Act. Health Aff (Millwood). 2015;34(12):2052-2060. doi: 10.1377/hlthaff.2015.0662.

Grob R, Schlesinger M, Davis S, Cohen D, Lapps J. The Affordable Care Act’s plan for consumer assistance with insurance moves states forward but remains a work in progress. Health Aff (Millwood). 2013;32(2):347-356. doi: 10.1377/hlthaff.2012.1090.

Evered JA, LaJeunesse A, Wynn M, Mrig E, Schlesinger M, Grob R. Gaps in benefits, awareness, and comprehension that leave those with long COVID vulnerable. Chronic Illn. Published online October 30, 2023. doi: 10.1177/17423953231210117.

Dowrick A, Grob R, Sawada A, Thier A, Holmberg C, Sato RS. Navigating responsible bio-political citizenship: cross-country comparison of stigma in Covid-19 illness narratives in Germany, Japan, the UK and the USA. SSM Qual Res Health. 2023;100291. doi: 10.1016/j.ssmqr.2023.100291.

Evered JA, Castellanos MEP, Dowrick A, Camargo Goncalves Germani AC, Rai T, Navarro de Souza A, Qureshi K, Gandolfo Conceição MI, Cabral I, Grob R. Talking about inequities: a comparative analysis of COVID-19 narratives in the UK, US, and Brazil. SSM Qual Res Health. 2023;3:100277. doi: 10.1016/j.ssmqr.2023.100277.

Grob R, Van Gorp S, Evered JA. “You have to trust yourself”: the overlooked role of self-trust in coping with chronic illness. Hastings Cent Rep. 2023;53(Suppl 2):S39-S45.

Maclean A, Hunt K, Brown A, Evered JA, Dowrick A, Fokkens A, Grob R, Law S, Locock L, Marcinow M, Smith L, Urbanowicz A, Verheij N, Wild C. Negotiation of collective and individual candidacy for long COVID healthcare in the early phases of the COVID-19 pandemic: validated, diverted and rejected candidacy. SSM Qual Res Health. 2023;3:100207. doi: 10.1016/j.ssmqr.2022.100207.

Dowrick A, Evered JA, Navarro Dias de Souza A, Thier A, Gandolfo Conceição MI, Holmberg C, et al. Sharing uncertainty: comparing patient narratives of help-seeking in the first year of the COVID-19 pandemic across the UK, USA, Brazil, Germany and Spain. SSM Qual Res Health. 2023;4:100306.

Qureshi K, Evered JA,Toyomoto R, Urbanowicz A., Sawada A, Smith L., Sakuma Sato R., Rai T.  COVID-19 trouble at work: a comparative qualitative analysis of disclosure, sickness absence and return-to-work in the UK, USA, Australia and Japan. SSM Qual Res Health. 2023;4: 100307

Van Gorp S, Grob R, George C, Sabadosa K. Wobbly moments: trust considerations for evolving cystic fibrosis care models. J Cyst Fibros. Published online September 21, 2024. doi: 10.1016/j.jcf.2024.09.006.

Grob R, Evered JA, Ofoha I, Van Gorp S, Rousseau M. “We talking about trust? I have some stories for you”: robust recruitment response through CFF Community Voice for qualitative research illuminates methods for advancing trust-based partnerships. J Cyst Fibros.2024;23(2): S314. doi:10.1016/S1569-1993(24)01409-7.

Grob R, Evered JA, Van Gorp S, Rousseau M. “Trust is at least as healing as medicine”: preliminary results from a large-scale qualitative study to enhance CF care partnerships. J Cyst Fibros. 2024;23(2): S310. doi:10.1016/S1569-1993(24)01401-2.

Tluczek A, Grob R, Warne E, Van Gorp S, Greene L, Homa K. Parenting children with cystic fibrosis: developmental acquisition of expertise. J Dev Behav Pediatr. 2022;43(7):e463-e472. doi: 10.1097/DBP.0000000000001089.

Tluczek A, Grob R, Gorp S, Greene L, Yu Z, Raymond K, et al. Partnerships in care: qualitative analysis of different perspectives. J Commun Healthc. 2021;15.

Krebsbach JK, Frie A, Llor X, Grob R, Schlesinger M, Weiss J. Comparing and contrasting lived experiences of patients with Lynch syndrome and polyposis syndromes. Gastroenterology. 2025;169(1 Suppl):S-1331.

Smith KC, Schlesinger M, Warne E, Wise M, Grob R. The familial canopy as thought space for meaning making, emotional calibration and planful action around inherited cancer risk. SSM Qual Res Health. 2023;3:100282.

Reynolds KA, Zelazny SM, Grob R, Parker AM, Schlesinger M, Martino SC. Family experience with hospital care teams: a qualitative investigation. Hosp Pediatr. 2025;15(5): e179-e185. doi:10.1542/hpeds.2023-007721 

Grob R, Schlesinger M, Wise M, Pandhi N. Stumbling into adulthood: learning from depression while growing up. Qual Health Res. 2020;30(9):1392-1408. doi:10.1177/1049732320914579

Mrig EH, Hall A, Johnson K, Warne E, Webb B, Meyn S, Al-Rayyan Y, Grob R. Participants’ experiences with and perspectives on genomic research in the University of Wisconsin Undiagnosed Disease Program. GIM Open. 2025;3(2):102400. doi: 10.1016/j.gimo.2025.102400

Johnston J, Lantos JD, Goldenberg A, Chen F, Parens E, Koenig BA; members of the NSIGHT Ethics and Policy Advisory Board. Sequencing newborns: a call for nuanced use of genomic technologies. Hastings Cent Rep. 2018 ;48 (Suppl 2):S2-S6. doi: 10.1002/hast.874.

Grob R. Newborn screening: guiding parents through the diagnostic maze. Contemp Pediatr. 2011;28(4): 38-47.

Grob R. Is my sick child healthy? Is my healthy child sick?: changing parental experiences of cystic fibrosis in the age of expanded newborn screening. Soc Sci Med. 2008;67(7):1056-1064. doi: 10.1016/j.socscimed.2008.06.003.

Grob R. Parenting in the genomic age: the “cursed blessing” of newborn screening. New Genet Soc. 2006;25(2):159-170.

Grob R, Schlesinger M. When public and private narratives diverge: media, policy advocacy, and the paradoxes of newborn screening policy. In: Hinton L, Locock L, Ziebland S, Lucius-Hoene G, Holmberg C, Meyer T, eds. Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford University Press; 2018.

Grob R. A house on fire: newborn screening, parents’ advocacy, and the discourse of urgency. In: Patients as Policy Actors. 2011:231-56.

Van Gorp S, Grob R, George C, Sabadosa K. Wobbly moments: trust considerations for evolving cystic fibrosis care models. J Cyst Fibros. Published online September 21, 2024. doi: 10.1016/j.jcf.2024.09.006.

Grob R, Evered JA, Ofoha I, Van Gorp S, Rousseau M. “We talking about trust? I have some stories for you”: robust recruitment response through CFF Community Voice for qualitative research illuminates methods for advancing trust-based partnerships. J Cyst Fibros. 2024;23(2): S314. doi:10.1016/S1569-1993(24)01409-7.

Grob R, Evered JA, Van Gorp S, Rousseau M. Trust is at least as healing as medicine: preliminary results from a large-scale qualitative study to enhance CF care partnerships. J Cyst Fibros. 2024;23(2): S310. doi: 10.1016/S1569-1993(24)01401-2

Schlesinger M, Grob R. When mistakes multiply: how inadequate responses to medical mishaps erode trust in American medicine. Hastings Cent Rep. 2023;53(5): S22-S32. doi:10.1002/hast.1520.

Schlesinger M, Grob R. When Mistakes Multiply: How Inadequate Responses to Medical Mishaps Erode Trust in American Medicine. Hastings Cent Rep. 2023;53 (Suppl 2):S22-S32. doi: 10.1002/hast.1520.

Grob R, Van Gorp S, Evered JA. “You have to trust yourself”: the overlooked role of self-trust in coping with chronic illness. Hastings Cent Rep. 2023;53(Suppl 2):S39-S45.

Grob R, Darien G, Meyers D. Why physicians should trust in patients. JAMA. 2019;321(14):1347-1348.

Meyers D, Darien G, Grob R. Physicians’ trust in patients—reply. JAMA. 2019;322(8):782-783.

Schlesinger M, Grob R, Gleason K, Yuan C, Haskell H, Giardina T, McDonald K. Patient experience as a source for understanding the origins, impact, and remediation of diagnostic errors. Volume 1: Why patient narratives matter. Rockville, MD: Agency for Healthcare Research and Quality; June 2023. AHRQ Publication No. 23-0040-2-EF.

Schlesinger M, Grob R, Gleason K, Yuan C, Haskell H, Giardina T, McDonald K. Patient experience as a source for understanding the origins, impact, and remediation of diagnostic errors. Volume 2: Eliciting patient narratives. Rockville, MD: Agency for Healthcare Research and Quality; June 2023. AHRQ Publication No. 23-0040-3-EF.