Publications & Reports

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 

Van Vliet, L., Donald, M., Jassemi, S., Verdin, N., Russon, N., Elliott, M., Hemmelgarn, B., Santana, M., McBrien, K., Bello, A., Quinn, A., & Valentijn, P. (2025). Exploring person-centered integrated kidney care: Insights from a Canadian study. International Journal of Integrated Care, 25, 332. https://doi.org/10.5334/ijic.ICIC24150 

Letourneau, N., Anis, L., Cui, C., Graham, I. D., Ross, K., Nixon, K., Reimer, J., Pilipchuk, M., Wang, E., Lalonde, S., Varro, S., Santana, M. J., Stewart-Tufescu, A., Soulsby, A., Tiedemann, B., Hill, L., Beks, T., & Hart, M. (2025). Study protocol for assessing the effectiveness, implementation fidelity and uptake of attachment & child health (ATTACH™) Online: Helping children vulnerable to early adversity. BMC Pediatrics, 25(1), 280. https://doi.org/10.1186/s12887-024-05232-w

McCabe, E., Bishnu Bajgain, Hindmarch, W., Dyson, M., McNeil, D., Ortega, I., Arnold, P. D., Dimitropoulos, G., Clements, R., Zwicker, J. D., & Santana, M. J. (2024). Evaluating the implementation of measurement-based care in child and adolescent mental health services as part of a learning health system. Research Square (Research Square). https://doi.org/10.21203/rs.3.rs-5390833/v1

Marina Rosa Filezio, Sharma, N., Thull-Freedman, J., Fabio Ferri-de-Barros, & Santana, M. J. (2024). Enhancing informed consent through multimedia tools in pediatric spinal surgery: a comprehensive review. Frontiers in Pediatrics, 12. https://doi.org/10.3389/fped.2024.1357462 

Shainur Premji, Deborah Ann McNeil, Maria Jose Santana, & Spackman, E. (2024). Examining the Relationship Between Screening for Postpartum Depression and Associated Child Health Service Utilization and Costs: A Study Using the All Our Families Cohort and Administrative Data. Maternal and Child Health Journal. https://doi.org/10.1007/s10995-023-03831-0 

Donald, M., Jassemi, S., Hecker, T., Brown, J., Van Vliet, L., Verdin, N., Russon, N., Pearson, B., Elliott    , M., Santana, M., McBrien, K., Bello, A., Quinn, A., Harwood, L., Hemmelgarn, B., & Valentijn, P. (2025). Person-centered integrated care for people living with kidney disease and multimorbidity: Exploring challenges and opportunities. International Journal of Integrated Care, 25(S2), 131. https://doi.org/10.5334/ijic.NACIC24131 

McCabe, E., Hindmarch, W., Bajgain, B., Jacob, J., Arnold, P. D., Ortega, I., Dyson, M., McNeil, D., Dimitropoulos, G., Clements, R., Santana, M. J., & Zwicker, J. D. (2025). Validity evidence for the use of the Pediatric Quality of Life Inventory, the Revised Children’s Anxiety and Depression Scale-25, and the Columbia-Suicide Severity Rating Scale in measurement-based care in intensive outpatient child and adolescent mental health care. Quality of Life Research. https://doi.org/10.1007/s11136-025-04037-3 

Rabi, S., Santana, M., Dimitropoulos, G., McBrien, K., Benterud, E., Wigston, L., & Tang, K. (2025). Exploring Patient Understandings of Navigation Services Within Alberta’s Healthcare System: A Qualitative Study. Health Expectations, 28(4), e70383. https://doi.org/10.1111/hex.70383 

Wolff, A. C., Absolom, K., Ahmed, S., Bartlett, S. J., Santana, M. J., Stover, A. M., & Austin, E. J. (2025). Enhancing provider adoption of patient-reported outcome measures (PROMs) through implementation science: Insights from two international workshops. Journal of Patient-Reported Outcomes, 9(1), 77. https://doi.org/10.1186/s41687-025-00911-3 

Rosa Filezio, M., Jooma, R., Fairie, P., Parsons, D., & Santana, M. J. (2025). Enhancing patient-centric care: The role of PROMs utilizing SRS-30 in pediatric scoliosis management. Journal of Patient-Reported Outcomes, 9(1), 78. https://doi.org/10.1186/s41687-025-00904-2 

Steele, B., Fairie, P., Kemp, K., D’Souza, A. G., Wilms, M., & Santana, M. J. (2025). Identifying Patient-Reported Care Experiences in Free-Text Survey Comments: Topic Modeling Study. JMIR Medical Informatics, 13, e63466–e63466. https://doi.org/10.2196/63466 

Bele, S., & Santana, M. J. (2025). Patient-reported outcome measures to deliver patient and family-centered care in pediatrics: The ball is now in our court. Frontiers in Health Services, 5, 1529731. https://doi.org/10.3389/frhs.2025.1529731 

Chomistek, K., Barnabe, C., Santana, M. J., Stinson, J. N., & Schmeling, H. (2025). Systematized literature review on the effectiveness of self-management programs for juvenile idiopathic arthritis. Discover Health Systems, 4(1), 4. https://doi.org/10.1007/s44250-025-00176-z 

Kemp, K. A., Fairie, P., & Santana, M. J. (2024). Patient Experiences With Hospitalization Due to Diabetes in Alberta, Canada: A Cohort Study Using Survey and Administrative Data. Canadian Journal of Diabetes. https://doi.org/10.1016/j.jcjd.2024.10.005 

Unni, E., van Muilekom, M. M., Absolom, K., Bajgain, B., Haverman, L., & Santana, M. (2024). Educating patients about patient-reported outcomes—are we there yet? Journal of Patient-Reported Outcomes, 8(1). https://doi.org/10.1186/s41687-024-00745-5 

Lalani, S., Mathias, H., Heisler, C., Rohatinsky, N., Mirza, R. M., Kits, O., Zelinsky, S., Nguyen, G., Lakatos, P. L., Fowler, S., Rioux, K., & Jones, J. L. (2024). Improving access to inflammatory bowel disease care in Canada: The patient experience. Journal of Health Services Research & Policy. https://doi.org/10.1177/13558196241276979 

Roberts, A., Benterud, E., Santana, M. J., Engbers, J., Lorenz, C., Verdin, N., Pearson, W., Edgar, P., Adekanye, J., Javaheri, P., MacDonald, C. E., Simmons, S., Zelinsky, S., Caird, J., Sawatzky, R., Har, B., Ghali, W. A., Norris, C. M., Graham, M. M., & James, M. T. (2024). APPROACH e-PROM system: a user-centered development and evaluation of an electronic patient-reported outcomes measurement system for management of coronary artery disease. Journal of Patient-Reported Outcomes, 8(1). https://doi.org/10.1186/s41687-024-00779-9 

McCabe, E., Dyson, M., McNeil, D., Hindmarch, W., Ortega, I., Arnold, P. D., Dimitropoulos, G., Clements, R., Santana, M. J., & Zwicker, J. D. (2024). A protocol for the formative evaluation of the implementation of patient-reported outcome measures in child and adolescent mental health services as part of a learning health system. Health Research Policy and Systems, 22(1). https://doi.org/10.1186/s12961-024-01174-y 

‌ Fariba Aghajafari, Wall, L., Weightman, A. M., Ness, A., Lake, D., Anupindi, K., Gayatri Moorthi, Kuk, B., Santana, M., & Coakley, A. (2024). An exploration of COVID-19 vaccination models for newcomer refugees and immigrants in Calgary, Canada. Archives of Public Health, 82(1). https://doi.org/10.1186/s13690-024-01255-y 

‌ Lawal, O. A., Awosoga, O. A., Santana, M. J., Ayilara, O. F., Wang, M., Graham, M. M., Norris, C. M., Wilton, S. B., James, M. T., & Sajobi, T. T. (2023). Response shift in coronary artery disease. Quality of Life Research, 33(3), 767–776. https://doi.org/10.1007/s11136-023-03564-1 

Kalpana Thapa Bajgain, Mendoza, J., Naqvi, F., Fariba Aghajafari, Tang, K., Zwicker, J., & Santana, M.-J. (2024). Prioritizing Patient Reported Outcome Measures (PROMs) to use in the clinical care of youth living with mental health concerns: a nominal group technique study. Journal of Patient-Reported Outcomes, 8(1). https://doi.org/10.1186/s41687-024-00694-z 

Santana, M.-J. (2023). Health-Related Quality of Life Measures and Lung Transplant Patients. Encyclopedia of Quality of Life and Well-Being Research, 3061–3067. https://doi.org/10.1007/978-3-031-17299-1_3841 

Kemp, K., Steele, B., Ahmed, S., Fairie, P., & Santana, M. (2024). Person-centred quality indicators are associated with unplanned care use following hospital discharge. BMJ Open Quality, 13(1), e002501. https://doi.org/10.1136/bmjoq-2023-002501 

Morin, S. A., Horta, A., Greer, K., Rai, P. P., Gross, H., Reiter, R., Nielssen, I., Bruce, M., Giroux, K., & Marshall, D. A. (2025). Seeing the Invisible Resiliency (STIR): Chronic Autoimmune Conditions and Post‐Secondary Education Experiences in Young Adulthood. Health Expectations, 28(4), e70332. https://doi.org/10.1111/hex.70332 

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 

Wilson, T., Dalton, M., Bhagat, N., Har, B., Abatan, D., Hazlewood, G., Santana, M.-J., Semeniuk, G., Kayode, A., Parmar, S., Pearson, W., Alhmoudi, A. M. M. M., Sharma, N., Wilton, S., Graham, M., James, M., & Sajobi, T. (2025). Understanding preferences of patients with multivessel coronary artery disease towards revascularisation and optimal medical therapy: A protocol for a discrete choice experiment. BMJ Open, 15(6), e094587. https://doi.org/10.1136/bmjopen-2024-094587 

Ren, M., Orsso, C. E., Ghomashchi, H., Da Silva, B. R., Aubrey, C., Nielssen, I., Pin, S., McNeely, M. L., Tandon, P., & Prado, C. M. (2025). Patient engagement strategies in digital health interventions for cancer survivors: A scoping review. PLOS Digital Health, 4(5), e0000871. https://doi.org/10.1371/journal.pdig.0000871 

Fabreau, G. E., Norrie, E., Holdbrook, L., Antonio, M., Essar, M. Y., Youssef, M., Sahilie, A., Yemane, M., Ramirez-Cerino, E., Hassan, N., Grewal, R., Hussain, Z., Altahsh, D., Magwood, O., Saad, A., Santana, M., Bharwani, A., Nielssen, I., Edwards, S. T., … Pottie, K. (2025). A Community-Engaged Public Health Research and Outreach Program for Migrant and Racialized Workers in Meat Processing to Mitigate COVID-19 Inequities. Public and Global Health. https://doi.org/10.1101/2025.05.28.25327793 

Altahsh, D., Holdbrook, L., Norrie, E., Sahilie, A., Essar, M. Y., Grewal, R., Horbach, O., Abdaly, F., Santana, M., Talavlikar, R., Aucoin, M., Coakley, A., & Fabreau, G. E. (2025). Empowering refugee voices: Using Nominal Group Technique (NGT) with a diverse refugee Patient Advisory Committee (PAC) to identify health and research priorities in Calgary, Canada. PLOS One, 20(5), e0323746. https://doi.org/10.1371/journal.pone.0323746 

Santos Salas, A., Watanabe, S. M., Sinnarajah, A., Bassah, N., Huang, F., Alcalde-Castro, J., Judge, H., O’Rourke, H. M., Camargo Plazas, P., Salami, B., Santana, M. J., Abdel Rahman, O., Iyiola, I., Wildeman, T., Vaughn, L., Ahmed, S., & The Patient Advisory Council. (2025). Improving equity and wellness in cancer care with people of Latin American and African Descent: A study protocol. Frontiers in Oncology, 15, 1469037. https://doi.org/10.3389/fonc.2025.1469037 

Antonio, M., Ramirez-Cerino, E., Sahilie, A., Yemane, M., Youssef, M., Nielssen, I., Holdbrook, L., Essar, M. Y., Santana, M., Spitzer, D., Pottie, K., & Fabreau, G. E. (2025). Vaccine Hesitancy, Coercion and Regret: Post-Pandemic Lessons on COVID-19 Vaccine Policies and Outreach among Newcomer Communities in Alberta, Canada. Public and Global Health. https://doi.org/10.1101/2025.02.03.25320914 

Myers-Stewart, M., Surti, M. S., Kennedy, M., Bruce, M., Castrellon Pardo, M., Patey, A. M., Donald, M., Jamal, Z., Santana, M. J., & Castillo, E. (2025). DECIDE, A Pregnancy-specific Patient-provider Communication Approach: Multi-method and Codesign. Pediatric Infectious Disease Journal, 44(2S), S153–S157. https://doi.org/10.1097/INF.0000000000004643 

Bergholtz, J., Wolf, A., Crine, V., Cleeve, H., Santana, M.-J., & Björkman, I. (2024). Patient and public involvement in healthcare: a systematic mapping review of systematic reviews – identification of current research and possible directions for future research. BMJ Open, 14(9), e083215. https://doi.org/10.1136/bmjopen-2023-083215 

Beaulieu, L., Bruce, M., Tiedemann, B., Chishti, R., Iqmat Iyiola, 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–e002851. https://doi.org/10.1136/bmjpo-2024-002851 

Roberts, N., Zelinsky, S., Ahmed, S., McMullan, C., & Young, L. (2024). Patient engagement in quality of life research. Quality of Life Research. https://doi.org/10.1007/s11136-024-03727-8 

Rabi, S., Patton, M., Santana, M.-J., & Tang, K. L. (2024). Patient engagement in the development and implementation of navigation services: a scoping review protocol. BMJ Open, 14(8), e082666–e082666. https://doi.org/10.1136/bmjopen-2023-082666 

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 

Marshall, D. A., Nitya Suryaprakash, Bryan, S., Barker, K. L., MacKean, G., Zelinsky, S., McCarron, T. L., Santana, M. J., Moayyedi, P., & Lavallee, D. C. (2023). Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools. Journal of the Canadian Association of Gastroenterology, 7(2), 177–187. https://doi.org/10.1093/jcag/gwad045 

Marshall, D. A., Nitya Suryaprakash, Lavallee, D. C., McCarron, T. L., Zelinsky, S., Barker, K. L., MacKean, G., Santana, M. J., Moayyedi, P., & Bryan, S. (2024). Studying How Patient Engagement Influences Research: A Mixed Methods Study. The Patient: Patient-Centered Outcomes Research. https://doi.org/10.1007/s40271-024-00685-8 ‌ 

Nielssen, I., Santana, M., Pokharel, S., Strain, K., Kiryanova, V., Zelinsky, S., Khawaja, Z., Khanna, P., Rychtera, A., & Ambasta, A. (2024). Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations: Health Expectations. Health Expectations, 27(1), 1–12. https://doi.org/10.1111/hex.13909 

Aghajafari, F., Wall, L., Weightman, A. M., Ness, A., Lake, D., Anupindi, K., Moorthi, G., Kuk, B., Santana, M., & Coakley, A. (2025). Mobilizing COVID-19 Vaccination Partnerships for Newcomer Refugees and Immigrants in the Calgary, Canada Area, 2021–2022. Journal of Immigrant and Minority Health, 27(4), 539–549. https://doi.org/10.1007/s10903-025-01687-w 

Marshall, D. A., Sidhu, S., Oddone Paolucci, E., Lopatina, E., Gallant, N., Manhas, K. P., McGrail, K., Wasylak, T., Zelinsky, S., Bryan, S., & Noseworthy, T. (2025). A national curriculum and community of practice for health services and policy research training: Insights from the Health System Impact Fellowship National Cohort Training Program ( HSIF NCTP ). Learning Health Systems, e70025. https://doi.org/10.1002/lrh2.70025 

Booth, J., Adebiyi, B., Birnie, K., Brooks, J., Chomistek, K., Guzman, J., Hellweg, R., Lim, L., Rumsey, D., Santana, M., Stinson, J., Tagseth, J., & Schmeling, H. (2025). Preliminary Results of a Pilot Randomized Controlled Trial: Feasibility and Acceptability of a Virtual Adolescent Self-Management Program for Juvenile Idiopathic Arthritis. The Journal of Rheumatology, 52(Suppl 2), 56.1-56. https://doi.org/10.3899/jrheum.2025-0314.26 

Booth, J., Birnie, K. A., Chomistek, K., Santana, M., Stinson, J. N., Adebiyi, B. O., Brooks, J., Guzman, J., Hellweg, R., Lim, L. S., Rumsey, D., Feldman, B. M., Tagseth, J., Wilson, J., & Schmeling, H. (2025). A Virtual Self-Management Intervention for Adolescents With Juvenile Idiopathic Arthritis: Protocol for the VISTA-JIA Randomized Controlled Trial. JMIR Research Protocols, 14, e69539. https://doi.org/10.2196/69539 

Adebiyi, B. O., Birnie, K. A., Booth, J., Lim, L. S., Rumsey, D., Santana, M., Stinson, J. N., & Schmeling, H. (2025). Fidelity of virtual self-management programs in pediatric autoimmune diseases: A scoping review protocol. MethodsX, 15, 103446. https://doi.org/10.1016/j.mex.2025.103446 

González García, E., Arroyo, T., Galván, M., Becerra, M. J., Gallego, M., Mauro, I., Hernández, Y., Pérez-Torres, A., López Oliva, M. O., Santana, M. J., & Jiménez, C. (2025). Association Between Nutritional Status and Early Postoperative Infection Risk in Kidney Transplant Patients. Nutrients, 17(11), 1935. https://doi.org/10.3390/nu17111935 

King, S., Sinnarajah, A., Ahmed, S., Paolucci, A., Shirt, L., Slobogian, V., Vig, C., Hao, D., Barbera, L. C., Kurien, E. C., Santana, M. J., Pabani, A., Biondo, P. D., & Simon, J. E. (2025). Patient-Rated Acceptability of Automatic Palliative Care Referral: A Prospective Cohort Study. Journal of Pain and Symptom Management, 69(5), 465–472. https://doi.org/10.1016/j.jpainsymman.2025.01.021 

Grendarova, P., Yannitsos, D., Ahmed, S., Santana, M., & Barbera, L. (2025). Experience of individuals with lung and gastrointestinal cancers undergoing radiation therapy: A qualitative study. Supportive Care in Cancer, 33(1), 51. https://doi.org/10.1007/s00520-024-09103-z 

González García, E., López Oliva, M., Mancebo, E., Santana, M. J., León Machado, L. M., Fuentes Fernández, C., & Jiménez, C. (2025). Efficacy and Safety of a Desensitization Treatment With Rituximab and Immunoglobulin in Hyperimmunized Patients Awaiting a Cadaveric Kidney Transplantation. Transplantation Proceedings, 57(1), 3–6. https://doi.org/10.1016/j.transproceed.2024.12.001 

Ambasta, A., Holroyd-Leduc, J. M., Pokharel, S., Mathura, P., Shih, A. W.-Y., Stelfox, H. T., Ma, I., Harrison, M., Manns, B., Faris, P., Williamson, T., Shukalek, C., Santana, M., Omodon, O., McCaughey, D., Kassam, N., & Naugler, C. (2024). Re-Purposing the Ordering of Routine Laboratory Tests in Hospitalized Medical Patients (RePORT): protocol for a multicenter stepped-wedge cluster randomised trial to evaluate the impact of a multicomponent intervention bundle to reduce laboratory test over-utilization. Implementation Science, 19(1). https://doi.org/10.1186/s13012-024-01376-6 

Fariba Aghajafari, Wall, L., Weightman, A., Ness, A., Lake, D., Anupindi, K., Gayatri Moorthi, Kuk, B., Santana, M., & Coakley, A. (2024). COVID-19 Vaccinations, Trust, and Vaccination Decisions within the Refugee Community of Calgary, Canada. Vaccines, 12(2), 177–177. https://doi.org/10.3390/vaccines12020177