PaCER Publications

Nielssen, I., Olson, S., Goulding, S., Bohja, S., Yu, M., Paguirigan, R., McEntee, E., Bruce, M., McKenzie, N., Fairie, P., & Santana, M. J. (2025). What Are the Barriers and Supports to a Return to Health From Long COVID? A Qualitative Study Designed, Developed, and Conducted by Individuals With Lived Experience of Long COVID. Qualitative Health Research, 10497323251337566. https://doi.org/10.1177/10497323251337566 

Beaulieu, L., Bruce, M., Tiedemann, B., Chishti, R., Iyiola, I., Penny, S., Leroux, C., Nielssen, I., Santana, M. J., & Castillo, E. (2024). Perspectives of parents with lived experience of cytomegalovirus infection, on universal newborn screening for congenital cytomegalovirus (cCMV) in Canada: A patient-led qualitative study. BMJ Paediatrics Open, 8(1), e002851. https://doi.org/10.1136/bmjpo-2024-002851 

Sutherland, H., Sutherland, S., Rondeau, R., Minde, G., Nielssen, I., & Flemons, K. (2024). Supporting Indigenous youth to live with continued resilience, meaning and hope. Spectrum, 13. https://doi.org/10.29173/spectrum246 

Bruce, M., Lopatina, E., Hodge, J., Moffat, K., Khan, S., Pyle, P., Kashuba, S., Wasylak, T., & Santana, M.-J. (2023). Understanding the chronic pain journey and coping strategies that patients use to manage their chronic pain: A qualitative, patient-led, Canadian study. BMJ Open, 13(7), e072048. https://doi.org/10.1136/bmjopen-2023-072048 

Currie, G. R., Harris, M., McClinton, L., Trehan, N., Van Dusen, A., Shariff, M., Kuzmyn, T., & Marshall, D. A. (2022). Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: A patient led qualitative study. BMC Rheumatology, 6(1), 85. https://doi.org/10.1186/s41927-022-00316-5 

Rines, J., Daley, K., Loo, S., Safari, K., Walsh, D., Gill, M., Moayyedi, P., Fernandes, A., Marlett, N., & Marshall, D. (2022). A patient‐led, peer‐to‐peer qualitative study on the psychosocial relationship between young adults with inflammatory bowel disease and food. Health Expectations, 25(4), 1486–1497. https://doi.org/10.1111/hex.13488 

Shewchuk, B., Green, L. A., Barber, T., Miller, J., Teare, S., Campbell-Scherer, D., Mrklas, K. J., Li, L. C., Marlett, N., Wasylak, T., Lopatina, E., McCaughey, D., & Marshall, D. A. (2021). Patients’ Use of Mobile Health for Self-management of Knee Osteoarthritis: Results of a 6-Week Pilot Study. JMIR Formative Research, 5(11), e30495. https://doi.org/10.2196/30495 

Gillis, C., Martin, L., Gill, M., Gilmour, L., Nelson, G., & Gramlich, L. (2019). Food Is Medicine: A Qualitative Analysis of Patient and Institutional Barriers to Successful Surgical Nutrition Practices in an Enhanced Recovery After Surgery Setting. Nutrition in Clinical Practice, 34(4), 606–615. https://doi.org/10.1002/ncp.10215 

Biondo, P. D., Kalia, R., Khan, R., Asghar, N., Banerjee, C., Boulton, D., Marlett, N., Shklarov, S., & Simon, J. E. (2017). Understanding advance care planning within the South Asian community. Health Expectations, 20(5), 911–919. https://doi.org/10.1111/hex.12531 

Gillis, C., Gill, M., Marlett, N., MacKean, G., GermAnn, K., Gilmour, L., Nelson, G., Wasylak, T., Nguyen, S., Araujo, E., Zelinsky, S., & Gramlich, L. (2017). Patients as partners in Enhanced Recovery After Surgery: A qualitative patient-led study. BMJ Open, 7(6), e017002. https://doi.org/10.1136/bmjopen-2017-017002 

Miller, J. L., Teare, S. R., Marlett, N., Shklarov, S., & Marshall, D. A. (2016). Support for Living a Meaningful Life with Osteoarthritis: A Patient-to-Patient Research Study. The Patient - Patient-Centered Outcomes Research, 9(5), 457–464. https://doi.org/10.1007/s40271-016-0169-9 

Gill, M., Bagshaw, S. M., McKenzie, E., Oxland, P., Oswell, D., Boulton, D., Niven, D. J., Potestio, M. L., Shklarov, S., Marlett, N., Stelfox, H. T., & Critical Care Strategic Clinical Network. (2016). Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research. PLOS ONE, 11(8), e0160947. https://doi.org/10.1371/journal.pone.0160947 

Stelfox, H., Gill, M., McKenzie, E., Oxland, P., Boulton, D., Oswell, D., Shklarov, S., & Bagshaw, S. (2015). 558: PATIENT AND FAMILY MEMBER RESEARCHERS IN THE ICU. Critical Care Medicine, 43, 141. https://doi.org/10.1097/01.ccm.0000474386.19665.39 

Singh, S., Burns, K. K., Rees, J., Picklyk, D., Spence, J., & Marlett, N. (2018). Patient and family engagement in Alberta Health Services: Improving care delivery and research outcomes. Healthcare Management Forum, 31(2), 57–61. https://doi.org/10.1177/0840470417747003 

Shklarov, S., Marshall, D. A., Wasylak, T., & Marlett, N. J. (2017). “Part of the Team”: Mapping the outcomes of training patients for new roles in health research and planning. Health Expectations, 20(6), 1428–1436. https://doi.org/10.1111/hex.12591 

Marlett, N., Shklarov, S., Marshall, D., Santana, M. J., & Wasylak, T. (2015). Building new roles and relationships in research: A model of patient engagement research. Quality of Life Research, 24(5), 1057–1067. https://doi.org/10.1007/s11136-014-0845-y 

Marlett, N., & Emes, C. (2010). Grey Matters: A guide to collaborative research with seniors. Calgary, AB. University of Calgary Press. http://press.ucalgary.ca/books/9781552382516

Smith, L., Obwona Ogaba, W. W., Netro, L., Frost, S., & Leach, M. (2025). In Their Words: COVID-19 Experiences of the Vuntut Gwitchin. International Journal of Indigenous Health, 20(2). https://doi.org/10.32799/ijih.v20i2.43727 

Iyiola, I., Ahmed, S., Fairie, P., Luzentales-Simpson, M., Manalili, K., & Santana, M. J. (2025). Measuring person-centred care in the mission, vision, and core value statements of Canadian healthcare organizations. BMC Health Services Research, 25(1), 530. https://doi.org/10.1186/s12913-025-12582-3 

Snowball, E., Aiken, C., Norman, M., Hykaway, W., Dempster, Z., Itzhak, I., McLellan, E., McGilton, K. S., & Bethell, J. (2024). Engaging people with lived experience of dementia in research meetings and events: Insights from multiple perspectives. Frontiers in Dementia, 3, 1421737. https://doi.org/10.3389/frdem.2024.1421737 

Manhas, K. P., Olson, K., Churchill, K., Miller, J., Teare, S., Vohra, S., & Wasylak, T. (2022). Exploring patient centredness, communication and shared decision‐making under a new model of care: Community rehabilitation in canada. Health & Social Care in the Community, 30(3), 1051–1063. https://doi.org/10.1111/hsc.13304 

Moayyedi, P., MacQueen, G., Bernstein, C. N., Vanner, S., Bercik, P., Madsen, K. L., Surette, M., Rioux, J. D., Dieleman, L. A., Verdú, E., De Souza, R. J., Otley, A., Targownik, L., Lavis, J., Cunningham, J., Marshall, D. A., Zelinsky, S., & Fernandes, A. (2020). IMAGINE Network’s Mind And Gut Interactions Cohort (MAGIC) Study: A protocol for a prospective observational multicentre cohort study in inflammatory bowel disease and irritable bowel syndrome. BMJ Open, 10(10), e041733. https://doi.org/10.1136/bmjopen-2020-041733 

Carr, E. C. J., Ortiz, M. M., Patel, J. N., Barber, C. E. H., Katz, S., Robert, J., Mosher, D., Teare, S. R., Miller, J., Homik, J., Dinsmore, K., & Marshall, D. A. (2020). Models of Arthritis Care: A Systems-level Evaluation of Acceptability as a Dimension of Quality of Care. The Journal of Rheumatology, 47(9), 1431–1439. https://doi.org/10.3899/jrheum.190501 

Mrklas, K. J., Barber, T., Campbell-Scherer, D., Green, L. A., Li, L. C., Marlett, N., Miller, J., Shewchuk, B., Teare, S., Wasylak, T., & Marshall, D. A. (2020). Co-Design in the Development of a Mobile Health App for the Management of Knee Osteoarthritis by Patients and Physicians: Qualitative Study. JMIR mHealth and uHealth, 8(7), e17893. https://doi.org/10.2196/17893 

Carr, E. C. J., Patel, J. N., Ortiz, M. M., Miller, J. L., Teare, S. R., Barber, C. E. H., & Marshall, D. A. (2019). Co-design of a patient experience survey for arthritis central intake: An example of meaningful patient engagement in healthcare design. BMC Health Services Research, 19(1), 355. https://doi.org/10.1186/s12913-019-4196-9 

Lopatina, E., Miller, J. L., Teare, S. R., Marlett, N. J., Patel, J., Barber, C. E. H., Mosher, D. P., Wasylak, T., Woodhouse, L. J., & Marshall, D. A. (2019). The voice of patients in system redesign: A case study of redesigning a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis. Health Expectations, 22(3), 348–363. https://doi.org/10.1111/hex.12855 

Barnabe, C., Miller, J., Teare, S., Eaglespeaker, C., Roland, B., Eshkakogan, N., Crowshoe, L., Lopatina, E., & Marshall, D. (2019). Solution Model for Enhancing the Experiences of Urban First Nations and Métis Patients Accessing and Navigating the Health System for Inflammatory Arthritis Care. International Indigenous Policy Journal, 10(2), 1–13. https://doi.org/10.18584/iipj.2019.10.2.3 

Barber, T., Sharif, B., Teare, S., Miller, J., Shewchuk, B., Green, L. A., Marlett, N., Cibere, J., Mrklas, K., Wasylak, T., Li, L. C., Campbell-Scherer, D., & Marshall, D. A. (2019). Qualitative study to elicit patients’ and primary care physicians’ perspectives on the use of a self-management mobile health application for knee osteoarthritis. BMJ Open, 9(1), e024016. https://doi.org/10.1136/bmjopen-2018-024016 

Barber, C. E. H., Sandhu, N., Rankin, J. A., MacMullan, P., Marshall, D. A., Barnabe, C., Hazlewood, G. S., Emrick, A., Stevenson, M., Then, K. L., Benseler, S., Twilt, M., & Mosher, D. (2019). Rheum4U: Development and testing of a web-based tool for improving the quality of care for patients with rheumatoid arthritis. Clinical and Experimental Rheumatology, 37(3), 385–392.

Wilson, T., Miller, J., Teare, S., Penman, C., Pearson, W., Marlett, N. J., Shklarov, S., Diane Galbraith, P., Southern, D. A., Knudtson, M. L., Norris, C. M., James, M. T., & Wilton, S. B. (2017). Patient perspectives on engagement in decision-making in early management of non-ST elevation acute coronary syndrome: A qualitative study. BMC Medical Informatics and Decision Making, 17(1), 153. https://doi.org/10.1186/s12911-017-0555-9 

Marlett, N., Shklarov, S., Marshall, D., Santana, M. J., & Wasylak, T. (2015). Building new roles and relationships in research: A model of patient engagement research. Quality of Life Research, 24(5), 1057–1067. https://doi.org/10.1007/s11136-014-0845-y