Research
Measurement of Person-Centred Care
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: 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
Canadian Institutes for Health Research, MSI Foundation, O’Brien Institute for Public Health Catalyst
Patient Reported Experiences & Outcomes
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.
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.
ACHRI, Department of Pediatrics Innovation Award, O’Brien Institute, Cumming School of Medicine, CIHR
Patient Engagement
Description of projects
Patient engagement is the “[m]eaningful and active collaboration in governance, priority setting, conducting research and knowledge translation. Depending on the context patient-oriented research may also engage people who bring the collective voice of specific, affected communities.” (CIHR)
The Person-Centred Care Team has been the home of the Alberta SPOR SUPPORT Unit’s Patient Engagement Team since 2019. The Team acts as the provincial connector in Alberta for patients, community members, organizations and academic & clinician researchers to work together to practice meaningful patient-oriented research.
Team: Maria J Santana, Paul Fairie, Sadia Ahmed, Ingrid Nielssen, Sumedh Bele, T Barbosa, S Zelinsky
Collaborators: Dr. Gina Dimitropoulos, Dr. Katie Birnie, Dr. Deborah Marshall
Alberta SPOR SUPPORT Unit, Canadian Institutes for Health Research