Research

Program of research

The concept of patient-centred care is changing the way healthcare is understood, accepted, and delivered. Traditionally, the quality of healthcare has been driven by policymakers and evaluated through the lens of healthcare professionals and management only, often excluding the patient perspective despite of recent policy emphasising that patient views complement healthcare provider perspectives, as well as provide unique information about healthcare effectiveness.

The Crossing the Quality Chasm by the Institute of Medicine (IOM) outlined six aims for quality improvement, which include the core need for healthcare to be patient-centred. According to the IOM’s deﬁnition, patient-centred care is care that aims to include the patients’ values, needs and preferences in the healthcare system, ensuring that patient values guide all clinical decisions. Furthermore, healthcare quality has been measured in terms of service and system performance without incorporating the patient perspective, needs or values. Healthcare quality indicators from and/or incorporating patient perspectives are lacking and have not been routinely integrated into the evaluation of healthcare system performance.

In our Measurement of Person-Centred Care program of research, we address this gap by working together with healthcare system stakeholders and patients to develop and implement Person-Centred Quality Indicators. This work allows healthcare organizations to assess the quality of patient-centred care being delivered and provide outcome measurement data that can be used by healthcare system regulators and healthcare professionals to target efforts to improve care and service delivery that reﬂects what patients need and want.

Core Team Members & Collaborators

Core Team: Kimberly Manalili, Sadia Ahmed, Chelsea Doktorchik, Sandra Zelinsky, Maria J. Santana

Collaborators: Sawatsky R, Quan H, Lorenzetti D, Lu M, Brien S.

Organizations Partners: ActionDignity, CIHI, Mo HBc, AH, AHS, HQCA, AHS Primary Care Networks

International Partners: Leeb K, Wallstrom S, Gibbons E, King J, Frank L.

International Organizational Partners: Picker Institute Europe; Institute of PCC Sweden

Funding

Canadian Institutes for Health Research, MSI Foundation, O’Brien Institute for Public Health Catalyst

Publications

Ludlow, N.C., de Grood, J., Yang, C. et al. A multi-step approach to developing a health system evaluation framework for community-based health care. BMC Health Serv Res 22, 889 (2022). https://doi.org/10.1186/s12913-022-08241-6

Manalili K, Scott CM, O'Beirne M, et al. Informing the implementation and use of person-centred quality indicators: a mixed methods study on the readiness, barriers and facilitators to implementation in Canada BMJ Open 2022;12:e060441. https://doi.org/10.1136/bmjopen-2021-060441

Santana MJ, Ahmed S, Lorenzetti DL, Jolley RJ, Manalili K, Zelinsky S, Quan H, Lu M. Measuring patient-centred system performance: A scoping review of patient-centred care quality indicators. BMJ Open Jan 2019;(1), e023596.

Manalili K, Siad FM, Antonio M, Lashewicz B, Santana MJ. Codesigning person‐centred quality indicators with diverse communities: A qualitative patient engagement study. Health Expectations. 2021 Dec 2.

Santana M- J, Manalili K, Zelinsky S, et al. Improving the quality of person- centred healthcare from the patient perspective: development of person- centred quality indicators. BMJ Open 2020;10:e037323. doi:10.1136/bmjopen-2020-037323

Ahmed S, Djurkovic A, Manalili K, Sahota B, Santana MJ. A qualitative study on measuring patient‐centered care: Perspectives from clinician‐scientists and quality improvement experts. Health science reports. 2019 Dec;2(12):e140.

Doktorchik C, Manalili K, Jolley R, Gibbons E, Lu M, Quan H, Santana MJ. Identifying Canadian patient-centred care measurement practices and quality indicators: a survey. CMAJ Open Dec 2018 Dec 18;6(4):E643-E650. DOI: 10.9778/cmajo.20170143.

Ahmed S, Siad FM, Manalili K, Lorenzetti DL, Barbosa T, Lantion V, Lu M, Quan H, Santana MJ . How to measure cultural competence when evaluating patient-centred care: a scoping review. BMJ Open 2018;8:e021525. doi:10.1136/bmjopen-2018-021525

Santana MJ, Manalili K, Jolley RJ, Zelinsky S, Quan H, Lu M. How to practice person‐centred care: A conceptual framework. Health Expectations. 2018 Apr;21(2):429-40.

Jolley RJ, Lorenzetti DL, Manalili K, et al. Protocol for a scoping review study to identify and classify patient-centred quality indicators. BMJ Open 2016;6:e013632. doi:10.1136/bmjopen-2016-013632

Presentations

Manalili K, Scott C, Hemmelgarn B, O’Beirne M, Santana MJ. Barriers and facilitators to using patient reported data for quality improvement: informing the implementation of person-centred quality indicators in Canada. International Society for Quality of Life Research 28th Annual Conference [virtual], October 12-28, 2021 (Oral presentation).

Manalili K, Scott C, Hemmelgarn B, O’Beirne M, Fairie P, Steele B, Santana, MJ. Optimizing the use of person-centred quality indicators: a mixed methods study assessing the readiness, barriers, and facilitators to implementation. Canadian Association for Health Policy and Research 2021 [virtual], May 19-21, 2021 (Oral presentation).

Manalili K, Scott C, O’Beirne M, Hemmelgarn B, Santana MJ. Co-designing the implementation of person-centred quality indicators. North American Primary Care Research Group (NAPCRG) 2020 Annual Meeting [virtual], November 20-24, 2020 (Poster presentation)

Manalili K, Scott C, Hemmelgarn B, O’Beirne M, Fairie P, Steele B, Santana MJ. Are healthcare organizations in Canada ready to use patient-reported data to improve person-centred care? A system-level perspective on the feasibility of implementing person-centred quality indicators. International Society for Quality of Life Research 27th Annual Conference [virtual], October 19-23, 2020 (Oral presentation).

Manalili K, Scott C, O’Beirne M, Hemmelgarn B, Santana MJ. Enhancing person-centred practice in primary care in Alberta: Implementation and evaluation of quality indicators informed by the patient voice. Alberta College of Family Physicians Family Medicine Summit 2020, March 2020, Banff, AB (Poster presentation).

Manalili K, Lantion V, Siad F, Antonio M, Barbosa T, Santana MJ. Collaborating with ethno-cultural and newcomer communities in person-centred care research. Newcomer Research Symposium, October 2019, Calgary AB (Oral presentation).

Ahmed S, Siad F, Manalili K, Lorenzetti D, Barbosa T, Lantion V, Lu M, Quan H, Santana MJ. How to measure cultural competence when evaluating person-centred care: a scoping review. Newcomer Research Symposium, October 2019, Calgary AB (Poster presentation).

Manalili K, Ahmed S, Barbosa T, Fairie P, Lantion V, Antonio M, Santana MJ. What does person-centred care mean to ethno-cultural and newcomer communities? Development of culturally-sensitive person-centred quality indicators. Newcomer Research Symposium, October 2019, Calgary AB (Poster presentation).

Manalili K, Santana MJ, Ahmed S, Mohamed B, Zelinsky S, McGhan G, McCaughey D. Person-centred healthcare quality: including patients in the consensus process to develop quality indicators. Canadian Association for Health Policy and Research 2019, May 2019, Halifax, NS (Poster presentation).

Santana MJ, Manalili K, Ahmed S, Zelinsky S, Sawatzky R, Lu Mingshan, Quan H. Development of quality indicators to enhance person-centred care for system-level application. Canadian Association for Health Policy and Research 2019, May 2019, Halifax, NS (Oral presentation).

Manalili K, Zelinsky S, Ahmed S, Mohamed B, McGhan G, McCaughey D, Santana MJ. Person-centred healthcare quality: including patients in the consensus process to develop quality indicators. Strategy for Patient-Oriented Research Summer Institute 2019, May 2019, Edmonton, AB (Oral presentation).

Ahmed S, Djurkovic A, Manalili K, Santana MJ. Measuring patient-centered care: Perspectives from clinician-scientists and quality improvement experts. 7th Biennial Spirituality Conference: Inspiring Person-Centredness, May 8-10, 2019, Vancouver, BC, Canada. (Oral presentation)

Manalili K, Scott CM, O’Beirne M, Hemmelgarn B, Santana MJ. Enhancing person-centred practice in primary care: implementation & evaluation of quality indicators informed by the patient perspective. Campus Alberta Student Conference on Health 2018, September 2018, Calgary, AB (Poster presentation).

Manalili K, Scott CM, Santana MJ. Assessing the feasibility of implementing person-centred quality indicators in Alberta. Canadian Association for Health Policy and Research 2018, May 2018, Toronto, ON (Poster Presentation).

Manalili K, Lantion V, Siad F, Antonio M, Santana MJ. Innovative methods for engaging ethno-cultural communities in patient and family-centred care research. Alberta Children’s Hospital Research Institute Symposium, May 2018, Calgary, AB (Rapid Fire presentation, Poster presentation)

Manalili K, Siad F, Lantion V, Santana MJ. Developing Person-centred quality indicators informed by the patient voice. International Society for Quality of Life Research 2017, October 2017, Philadelphia, Pennsylvania, USA (Poster Presentation).

Manalili K, Lantion V, Siad F, Santana MJ. Collaborating with Ethno-cultural communities for person-centred outcome research: approaches to engagement. International Society for Quality of Life Research 2017, October 2017, Philadelphia, Pennsylvania, USA (Poster Presentation).

Manalili K, Said F, Lantion V, Santanta MJ. Developing person-centred quality indicators informed by the patient voice. Canadian Association for Health Policy and Research 2017, May 2017, Toronto, ON (Poster Presentation).

Manalili K, Lantion V, Siad F, Santana MJ. Collaborating with ethno-cultural communities for person-centred care research: approaches to engagement. Canadian Association for Health Policy and Research 2017, May 2017, Toronto, ON (Poster Presentation).

Jolley RJ, Manalili K, Lu M, Santana MJ. A Conceptual framework for practising person-centred care: a narrative review. Canadian Association for Health Policy and Research 2017, May 2017, Toronto, ON (Poster Presentation).

Doktorchik C, Manalili K, Jolley RJ, Guo T, Santana MJ. Identifying patient-centred quality indicators: an environmental scan of patient-centred care measurement in Canada. Canadian Association for Health Policy and Research 2017, May 2017, Toronto, ON (Oral Presentation).

Jolley RJ, Manalili K, Lu M, Santana MJ. Improving patient-centred system performance: A scoping review of patient-centered quality indicators. International Society of Quality of Life Research 2016, October 2016, Copenhagen, Denmark (Oral Presentation).

Manalili, K, Jolley RJ, Lu M, Lorenzetti D, Quan H, Santana MJ. Developing an evidence-based framework for measuring patient-centred care: a scoping review. International Society for Quality of Life Research 2016, October 2016, Copenhagen, Denmark (Poster Presentation).

Guo T, Manalili K, Jolley RJ, Doktorchik C, Santana MJ. Environmental Scan for Quality Indicators Used to Measure Patient-Centred Care in Canada, the UK, Australia, New Zealand, and Sweden. Campus Alberta Student Conference on Health 2016, September 2016 Calgary, AB (Poster presentation).

Goodman L, Zelinsky S, Manalili K, Jolley RJ, Doktorchik C, Santana MJ. A scoping review of grey literature for patient-centred quality indicators: comparison of patient partner and researcher results. Campus Alberta Student Conference on Health 2016, September 10-11, 2016 Calgary, AB (Poster presentation).

Jolley RJ, Manalili K, Lu M, Santana MJ. Improving patient-centred system performance: A scoping review of patient-centered quality indicators. Canadian Association for Health Policy and Research 2016 Toronto, ON (Oral Presentation).

Jolley RJ, Manalili K, Southern D, Santana MJ. Measuring patient-centred care: an environmental scan in the province of Alberta. Canadian Association for Health Policy and Research 2016 Toronto, ON (Poster Presentation).

Description of projects

Patient-reported Experience Measures (PREMs): Improving the patient experience is a key objective of the Institute for Healthcare Improvement’s (IHI) Triple Aim Framework. To realize this, many healthcare organizations routinely collect patient experience survey data. In Canada, the Canadian Patient Experience Survey assesses the experiences of patients that have been hospitalized at provincial and national level. In Alberta, Alberta Health Services (AHS) provide patients and caregivers with the opportunity to report their concerns related to their encounters with the health services.

Despite the vast amounts of data collected, knowledge of these surveys and how the data may be translated into improvements remains low. Furthermore, surveys often rely on a random sample, and may not capture the experiences of certain groups due to survey limitations (e.g., non-English speakers, persons living with cognitive impairments).

The Person-Centred Care Team’s Patient Experience mission involves collaborating with AHS, AHS SCNsTM, the Health Quality Council of Alberta (HQCA) and community organizations to examine the various methods which are used to capture the experiences of patients and caregivers, and explore how novel methods beyond surveys can be used to gain a better understanding of what matters to patients and caregivers during their healthcare journey.

Patient-reported Outcome Measures (PROMs): Patient-reported outcome and experience measures (PROMs) facilitate patient-centric measurements of health outcomes and quality of care. PROMs are validated questionnaires that place the values and perspectives of the patient at the center of healthcare practice and service. PROMs are concerned with the outcomes of a patient’s health condition or disability, and are known as: “any report of the patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else”. Generally, PROMs include measures of symptom burden that report the frequency, severity, and impact of symptoms. Our team has developed a summary and recommendations surrounding the role of patient-reported outcomes in patient-centred care in Canada.

Team Members & Collaborators

PREMs: Maria J. Santana, Brian Steele, Sadia Ahmed, Bishnu Bajgain, Sumedh Bele, Erin McCabe, Sandra Zelinsky, D’Arcy Duquette, Kyle Kemp, Dr. Elizabeth Oddone-Paolucci

PROMs: Maria J. Santana, David Feeny, Sumedh Bele, Lotte Haverman, Paul Fairie, Jennifer Zwicker, Erin McCabe, Samantha Anthony, Paul Arnold, Susan Graham, Dr. Elizabeth Oddone-Paolucci.