Selected Presentations
Grob R. What Patients are Saying About Cancer, Genetics, and Genomics. Presentation at The National Patient Advocate Foundation Policy Forum; May 15, 2019; Washington DC.
Grob, R. Qualitative Research: Robust but Marginalized. Invited Speaker at The Hastings Center, Looking for the Psychosocial Impacts of Genomic Information; February 27, 2018; New York, NY.
Selected Publications
Methodological Areas
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 Apr;26(2):133-140. doi: 10.1177/1355819620948909. Epub 2020 Sep 24. PMID: 32969297.
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
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 Oct 16. doi: 10.1111/1475-6773.14245. Epub ahead of print. PMID: 37845082.
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 Apr;58(2):271-281. doi: 10.1111/1475-6773.14134. Epub 2023 Jan 29. PMID: 36645204; PMCID: PMC10012224.
Lee Y, Grob R, Nembhard I, Shaller D, and Schlesinger M, 2022: A New Frontier: Patients as Sources of Creative Ideas for Health Care Improvement. Acad. Manag. Proc. 2022, https://doi.org/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. PMID: 30883954; PMCID: PMC6422610.
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 Oct;77(5):416-427. doi: 10.1177/1077558718803859. Epub 2018 Oct 6. PMID: 30293521; PMCID: PMC6731154.
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 Jul 29;8(1):34. doi: 10.1186/s40900-022-00369-3. PMID: 35906697; PMCID: PMC9335457.
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 Jan;95(1):72-76. doi: 10.1097/ACM.0000000000002893. PMID: 31348061.
Schlesinger M, Grob R, Shaller D. Using Patient-Reported Information to Improve Clinical Practice. Health Serv Res. 2015 Dec;50 Suppl 2(Suppl 2):2116-54. doi: 10.1111/1475-6773.12420. Epub 2015 Nov 17. PMID: 26573890; PMCID: PMC5115180.
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 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 May 25;6(1):e10269. doi: 10.1002/lrh2.10269. PMID: 35036551; PMCID: PMC8753297.
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. PMID: 30883954; PMCID: PMC6422610.
Grob R. Qualitative Research on Expanded Prenatal and Newborn Screening: Robust but Marginalized. Hastings Cent Rep. 2019 May;49 Suppl 1(Suppl 1):S72-S81. doi: 10.1002/hast.1019. PMID: 31268576; PMCID: PMC8115092.
Grob R, Roberts S, Timmermans S. Families’ Experiences with Newborn Screening: A Critical Source of Evidence. The Ethics of Sequencing Newborns: Recommendations and Reflections, special report, Hastings Center Report 48, no. 4 (2018): 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 Experience Journal. 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: Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts, edited by L. Hinton, L. Locock, S. Ziebland, G. Lucius-Hoene, C. Holmberg and T. Meyer Oxford University Press 2018 DOI 10.1093/med/9780198806660.003.0023 https://doi.org/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 Aug 13;373(7):675-9. doi: 10.1056/NEJMsb1502361. PMID: 26267629.
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. CAM. 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 Sep 21;25:21.083. doi: 10.7812/TPP/21.083. PMID: 35348107; PMCID: PMC8784084.
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 Aug 13;373(7):675-9. doi: 10.1056/NEJMsb1502361. PMID: 26267629.
Grob R. The heart of patient-centered care. J Health Polit Policy Law. 2013 Apr;38(2):457-65. doi: 10.1215/03616878-1966406. Epub 2012 Dec 21. PMID: 23262765.
Health Experiences Areas
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 Affairs 2019 Vol. 38 Issue 3 Pages 374-382 Accession Number: 30830827 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 Feb;34(2):243-249. doi: 10.1007/s11606-018-4725-y. Epub 2018 Nov 16. PMID: 30446909; PMCID: PMC6374266.
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 Experience Journal. 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? Medical Care Research and Review. 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 Jun 1;23(6):e202-e207. PMID: 28817297.
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 Mar;4(1):37-45. doi: 10.1177/2374373516685940. Epub 2017 Jan 1. PMID: 28725858; PMCID: PMC5513663.
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 Jun;51 Suppl 2(Suppl 2):1248-72. doi: 10.1111/1475-6773.12503. Epub 2016 Apr 29. PMID: 27126144; PMCID: PMC4874935.
Grob R, Schlesinger M. Educating, Enrolling, And Engaging: The State of Marketplace Consumer Assistance Under the Affordable Care Act. Health Aff (Millwood). 2015 Dec;34(12):2052-60. doi: 10.1377/hlthaff.2015.0662. PMID: 26643625.
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 Feb;32(2):347-56. doi: 10.1377/hlthaff.2012.1090. PMID: 23381528.
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. 2023 Oct 30:17423953231210117. doi: 10.1177/17423953231210117. Epub ahead of print. PMID: 37899735.
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 Jun 10:100291. doi: 10.1016/j.ssmqr.2023.100291. Epub ahead of print. PMID: 37361642; PMCID: PMC10257512.
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 Jun;3:100277. doi: 10.1016/j.ssmqr.2023.100277. Epub 2023 May 6. PMID: 37197405; PMCID: PMC10163940.
Grob R, Van Gorp S, Evered JA. “You have to trust yourself”: The Overlooked Role of Self-Trust in Coping with Chronic Illness. Hastings Center Report. 2023;53(S2):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 Jun;3:100207. doi: 10.1016/j.ssmqr.2022.100207. Epub 2022 Dec 5. PMID: 36507117; PMCID: PMC9721377.
Dowrick A, Evered JA, Navarro Dias de Souza A, Thier A, Inês Gandolfo Conceição M, 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 – Qualitative Research in 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, the USA, Australia and Japan, SSM – Qualitative Research in Health, Volume 4, 2023, 100307, ISSN 2667-3215,
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 Sep 1;43(7):e463-e472. doi: 10.1097/DBP.0000000000001089. Epub 2022 May 18. PMID: 35583947.
Tluczek A, Grob R, Gorp S, Greene L, Yu Z, Raymond K, et al. Partnerships in care: qualitative analysis of different perspectives. Journal of Communication in Healthcare. 2021;15.
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 – Qualitative Research in Health. 2023;3:100282.
Grob R, Schlesinger M, Wise M, Pandhi N. Stumbling into Adulthood: Learning from Depression While Growing Up. Qualitative Health Research. 2020;30(9):1392-1408. doi:10.1177/1049732320914579
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 Jul;48 Suppl 2(Suppl 2):S2-S6. doi: 10.1002/hast.874. PMID: 30133723; PMCID: PMC6901349.
Grob R. Newborn Screening: Guiding Parents Through the Diagnostic Maze. Contemporary Pediatrics, 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 Oct;67(7):1056-64. doi: 10.1016/j.socscimed.2008.06.003. Epub 2008 Jul 17. PMID: 18639968.
Grob R. Parenting in the genomic age: the ‘cursed blessing’ of newborn screening. New Genetics and Society. 2006;25(2):159-70.
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, editors. Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts: Oxford University Press: New York.
Grob R. A house on fire: Newborn screening, parents’ advocacy, and the discourse of urgency. Patients as Policy Actors. 2011:231-56.
Schlesinger M, Grob R. When Mistakes Multiply: How Inadequate Responses to Medical Mishaps Erode Trust in American Medicine. Hastings Cent Rep. 2023 Sep;53 Suppl 2:S22-S32. doi: 10.1002/hast.1520. PMID: 37963044.
Grob R, Van Gorp S, Evered JA. “You have to trust yourself”: The Overlooked Role of Self-Trust in Coping with Chronic Illness. Hastings Center Report. 2023;53(S2):S39-S45.
Grob R, Darien G, Meyers D. Why Physicians Should Trust in Patients. JAMA. 2019;321(14):1347-8. Meyers D, Darien G, Grob R. Physicians’ Trust in Patients—Reply. JAMA. 2019;322(8):782-3.
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.