Maria Jose Santana

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Verified

Maria verified their affiliation via an institutional email.

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• MPharm, PhD
• Professor at University of Calgary

Introduction The selection of the optimal treatment strategy remains one of the most challenging decisions in the management of coronary artery disease (CAD). Surgical and percutaneous coronary revascularisation are two widely used treatments for managing CAD and can result in improved outcomes compared with medications alone. Current practice guid...

Objective: COVID-19 has disproportionately impacted migrant workers in meat processing industries, causing mass outbreaks and fatalities. Implementing community-based participatory research (CBPR) methods may increase public health engagement, but developing the prerequisite trust is hindered during a public health crisis. Methods: We used CBPR met...

Background Despite rising forced displacement globally, refugees’ health and research priorities are largely unknown. We investigated whether a diverse refugee committee could utilize participatory methods to identify health priorities and a research agenda to address them. Methods We conducted a qualitative study with focus groups of current and...

The COVID-19 public health emergency challenged the capacity for public health systems to vaccinate newcomer refugees and immigrants in the Calgary, Canada, area. In response, community-health partnerships emerged in 2021–2022 to provide accessible, culturally responsive, and adapted services for community members. This research highlights communit...

Background Person-centred care (PCC) has been shown to improve health outcomes. The inclusion and incorporation of person-centredness in care has been a growing priority for healthcare organizations across Canada. Methods Person-Centred Care Quality Indicators (PC-QI) evaluate to what extent various PCC elements have been integrated into healthcar...

Background Exposure to early childhood adversities, such as family violence, parental depression, or low-income, undermine parent–child relationship quality and attachment leading to developmental and mental health problems in children. Addressing impacts of early childhood adversity can promote children’s development, giving them the best start in...

Introduction: One in ten Canadians face kidney disease. Both patients and providers have been calling for strategies to address the needs of individuals with early-stage chronic kidney disease. This population faces a high burden of multimorbidity (occurrence of two or more chronic conditions) and requires coordinated care across multiple providers...

Background Cancer inequities such as late access to cancer screening and diagnosis affect people of African and Latin American descent in Canada. These inequities in addition to experiences of racism and discrimination and unequal living and working conditions are detrimental to their wellness. We aim to delineate together with people of African an...

Patient-reported Outcome Measures (PROMs) are self-reported questionnaires that are used to deliver patient and family-centered care, but their use in routine pediatric clinical care remains limited. The American Institute of Medicine (IOM) recommends patient-centered care to achieve high quality health care delivery and PROMs can be used in routin...

Background Vaccination in pregnancy is recommended for preventing maternal and infant morbidity, but uptake is low. Existing presumptive and participatory vaccine communication approaches for childhood vaccinations may not encompass the nuanced decision-making during pregnancy. Methods We employed a multi-method study using the double diamond desi...

Background Since the COVID-19 pandemic routine vaccination rates have dropped in Canada. Many newcomers and refugees experience significant vaccine inequities despite wide vaccine availability and COVID-19 pandemic vaccination campaigns. We aimed to investigate post-pandemic vaccine hesitancy, acceptance, and vaccine outreach strategies among newco...

Self-management skills are critical in chronic diseases such as juvenile idiopathic arthritis (JIA). We conducted a systematized review to synthesize the components and effectiveness of existing self-management programs (SMPs) for adolescents with JIA. Relevant literature was identified from four databases (PsychINFO, CINAHL, Medline (Ovid), and Em...

Purpose Lung cancer remains one of the most diagnosed cancers in Canada and continues to be the leading cause of cancer deaths in Canada, responsible for 25% of all cancer deaths. Prior studies consistently report poor experiences of people with lung cancers. The study purpose was to explore the reasons for consistently poorer reported experience o...

The COVID-19 public health emergency challenged the capacity for public health systems to vaccinate newcomer refugees and immigrants in the Calgary, Canada area. In response, community-health partnerships emerged in 2021-2022 to provide accessible, culturally responsive, and adapted services for community members. This research highlights community...

Background Mental health conditions affect one in seven young people and research suggests that current mental health services are not meeting the needs of many children and youth. Learning health systems are an approach to enhancing mental health services through rapid, routinized cycles of continuous learning and improvement. Patient-reported out...

Background Using Patient Reported Outcome Measures (PROMs) in clinical settings can improve patient outcomes by enhancing communication between patient and provider. There has been significant improvements in the development of PROMs, their implementation in routine patient clinical care, training physicians and other healthcare providers to interp...

Background Previous research has suggested that alternative (respiratory) care providers (ACP) may provide affordable, accessible care for sleep-disordered breathing (SDB) that decreases wait-times and improves clinical outcomes. The objective of this study was to compare ACP-led and sleep physician-led care for SDB on patient reported outcome and...

Objectives To provide an overview of patient and public involvement (PPI) in the mesolevel and macrolevel of healthcare (different from PPI in research) and identify directions for future research by mapping contexts, terminology, conceptual frameworks, measured outcomes and research gaps. Design Mapping review of systematic reviews. A patient cor...

Background Coronary artery disease (CAD) confers increased risks of premature mortality, non-fatal morbidity, and significant impairment in functional status and health-related quality of life. Routine administration of electronic patient-reported outcome measures (PROMs) and its real time delivery to care providers is known to have the potential t...

Background: Despite rising forced displacement globally, refugees health and research priorities are largely unknown. We investigated whether a diverse refugee committee could utilize participatory methods to identify health priorities and a research agenda to address them. Methods: We conducted a qualitative study with focus groups of current and...

Objective To understand parental perspectives regarding universal newborn screening (UNS) for congenital cytomegalovirus (cCMV) in Canada. Design A qualitative, patient-led study using the Patient and Community Engagement Research approach consisting of online focus groups and in-depth individual interviews to understand parental preferences regar...

Introduction Patient navigation, a complex health intervention meant to address widespread fragmentation across the healthcare landscape, has been widely adopted internationally. This rapid uptake in patient navigation has led to a broadening of the service’s reach to include those of different social positions and different health conditions. Desp...

Pediatric spine surgery is a high complexity procedure that can carry risks ranging from pain to neurological damage, and even death. This comprehensive mini review explores current best practice obtaining valid and meaningful informed consent (IC) prior to pediatric spinal surgery, including modalities that support effective comprehension and unde...

Background Mental health conditions affect one in seven young people and research suggests that current mental health services are not meeting the needs of most children and youth. Learning health systems are an approach to enhancing services through rapid, routinized cycles of continuous learning and improvement. Patient-reported outcome measures...

Background Laboratory test overuse in hospitals is a form of healthcare waste that also harms patients. Developing and evaluating interventions to reduce this form of healthcare waste is critical. We detail the protocol for our study which aims to implement and evaluate the impact of an evidence-based, multicomponent intervention bundle on repetiti...

BACKGROUND Patient-reported experience surveys allow administrators, clinicians, and researchers to quantify and improve healthcare by receiving feedback directly from patients. Existing research has focused primarily on quantitative analysis of survey items, but these measures may collect optional free-text comments. These comments can provide ins...

Background Patient-reported experience surveys allow administrators, clinicians, and researchers to quantify and improve health care by receiving feedback directly from patients. Existing research has focused primarily on quantitative analysis of survey items, but these measures may collect optional free-text comments. These comments can provide in...

Background Exposure to early childhood adversities, such as family violence, parental depression, or low-income, undermine parent-child relationship quality and attachment leading to developmental and mental health problems in children. Addressing impacts of early childhood adversity can promote children’s development, giving them the best start in...

There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence. We used a convergent mixed method des...

Background The World Health Organization stresses the need for tailored COVID-19 models of vaccination to meet the needs of diverse populations and ultimately reach high rates of vaccination. However, little evidence exists on how COVID-19 models of vaccination operated in the novel context of the pandemic, how vulnerable populations, such as refug...

Background Substitute decision‐makers (SDMs) make decisions that honor medical, personal, and end‐of‐life wishes for older adults who have lost capacity, including those with dementia. However, SDMs often lack support, information, and problem‐solving tools required to make decisions and can suffer with negative emotional, relationship, and financi...

Background In the past few decades, particularly in the mental health setting, there has been growing interest in using Patient Reported Outcome Measures (PROMs) to assess the efficacy of the treatments in healthcare systems. Despite recent initiatives for global harmonization, there remains a lack of consensus on which PROMs are best practice and...

Background: Maternal morbidity can be conceptualized in multiple and unique ways by healthcare professionals, and patients. For pregnant persons and their families, adverse events in pregnancy can often extend beyond the scope of clinical diagnoses. This patient-led, peer-to-peer study aimed to understand how pregnant persons and their families des...

Refugee decisions to vaccinate for COVID-19 are a complex interplay of factors which include individual perceptions, access barriers, trust, and COVID-19 specific factors, which contribute to lower vaccine uptake. To address this, the WHO calls for localized solutions to increase COVID-19 vaccine uptake for refugees and evidence to inform future va...

Objective Performance indicators are used to evaluate the quality of healthcare services. The majority of these, however, are derived solely from administrative data and rarely incorporate feedback from patients who receive services. Recently, our research team developed person-centred quality indicators (PC-QIs), which were co-created with patient...

Introduction: While patient and public involvement (PPI) is increasingly required by policymakers and funding agencies, the vast amount of literature on this topic makes it difficult for stakeholders who are at the beginning of their journey to find guidance on conceptual frameworks, successful methods, and good examples for PPI in contexts/setting...

Purpose Patients with coronary artery disease (CAD) experience significant angina symptoms and lifestyle changes. Revascularization procedures can result in better patient-reported outcomes (PROs) than optimal medical therapy (OMT) alone. This study evaluates the impact of response shift (RS) on changes in PROs of patients with CAD across treatment...

Background Cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadia...

Background Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders. Methods We established two small research groups, a Patient Researcher-Led Group and an Acad...

Introduction The onset of COVID-19 has caused an international upheaval of traditional in-person approaches to care delivery. Rapid system-level transitions to virtual care provision restrict the ability of healthcare professionals to evaluate care quality from the patient's perspective. This poses challenges to ensuring that patient-centered care...

Objective The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research. Design We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. On...

Background Hospitals and healthcare workers have been greatly impacted by the COVID-19 pandemic. The potential impacts upon the patient experience have been less documented, particularly in the pediatric setting. Our aim was to examine how parental experiences with their child’s hospitalization varied during the COVID-19 pandemic at two children’s...

Background Inclusiveness, Support, Mutual Respect and Co‐Build are the four pillars of patient engagement according to the Strategy for Patient‐Oriented Research (SPOR). The aim of this manuscript is to describe the operationalization of these principles through the creation of a Patient Advisory Council (PAC) for the research study titled ‘Re‐Purp...

Objective Implementation of patient-reported outcome measures (PROMs) is limited in paediatric routine clinical care. The KidsPRO programme has been codesigned to facilitate the implementation of PROMs in paediatric healthcare settings. Therefore, this study (1) describes the development of innovative KidsPRO programme and (2) reports on the feasib...

Introduction Despite a recognized association between maternal postpartum depression (PPD) and adverse child health outcomes, evidence examining the relationship between PPD symptoms and associated child health service utilization and costs remains unclear. In addition, there is a paucity of evidence describing the relationship between early identi...

Background The World Health Organizations stresses the need for tailored COVID-19 models of vaccination to meet the needs of diverse populations and ultimately reach high rates of vaccination. However, little evidence exists on how COVID-19 models of vaccination operated in the novel context of the pandemic, how vulnerable populations, such as refu...

Background Modality transitions represent a period of significant change that can impact health related quality of life (HRQoL). We explored the HRQoL of adults transitioning to new or different dialysis modalities. Methods We recruited eligible adults (≥ 18) transitioning to dialysis from pre-dialysis or undertaking a dialysis modality change bet...

Background In patient-oriented research (POR), patients contribute their valuable knowledge and lived-experiences to work together as active research partners at all stages of the health research cycle. However, research looking to understand how patient research partners (PRPs) and researchers work together in meaningful and collaborative ways rem...

Designing appropriate rehabilitation programs for long COVID-19 remains challenging. The purpose of this study was to explore the patient experience of accessing long COVID-19 rehabilitation and recovery services. In this cross-sectional, observational study, a telephone survey was administered to a random sample of persons with long COVID-19 in a...

Objective To gain an insight into coping strategies that people living with chronic pain use to self-manage their pain. Design This qualitative Patient-oriented Research study used the Patient and Community Engagement Research approach. It was conducted by people with chronic pain lived experience, ensuring that patient perspective and needs were...

Background Implementing Patient-reported Outcome Measures (PROMs) and Patient-reported Experience Measures (PREMs) is an effective way to deliver patient- and family-centered care (PFCC). Although Alberta Health Services (AHS) is Canada's largest and fully integrated health system, PROMs and PREMs are yet to be routinely integrated into the pediatr...

Mental health concerns among children and youth in Alberta are increasing while poor mental health remains as one of the largest threats to childhood in Alberta. In Canada, mental illness impacts 1 in 4 youth. Demands for mental health services have steadily increased over the past 10 years. To address the child and youth mental health crisis, stra...

The relationship between initial COVID-19 infection and the development of long COVID remains unclear. The purpose of this study was to compare the experience of long COVID in previously hospitalized and non-hospitalized adults in a community-based, cross-sectional telephone survey. Participants included persons with positive COVID-19 test results...

Introduction Patient engagement in patient‐oriented research (POR) is described as patients collaborating as active and equal research team members (patient research partners [PRPs]) on the health research projects and activities that matter to them. The Canadian Institutes of Health Research (CIHR), Canada's federal funding agency for health resea...

Background: In the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical care, research and intervention development. Although more a...

Background: The use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in pediatric clinical practice can enhance clinical care and bring children and families' perspectives into evaluations of healthcare services. Implementing these measures is complex and requires a thorough assessment of the context of...

Background: Patient-reported outcome measures (PROMs) are standardized and validated self-administered questionnaires that assess whether healthcare interventions and practices improve patients' health and quality of life. PROMs are commonly implemented in children and youth mental health services, as they increasingly emphasize patient-centered c...

Objective To develop a set of patient and family engagement indicators (PFE-Is) for measuring engagement in health system improvement for a Canadian provincial health delivery system through an evidence-based consensus approach. Design This mixed-method, multiphase project included: (1) identification of existing measures of patient and family eng...

Background: Mental health conditions affect one in seven young people and research suggests that current mental health services are not meeting the needs of most children and youth. Learning health systems are an approach to enhancing through rapid, routinized cycles of continuous learning and improvement. Patient-reported outcome measures provide...

Background Patient-reported outcome measures (PROMs) are standardized instruments used for assessing patients’ perspectives on their health status at a point in time, including their health-related quality of life, symptoms, functionality, and physical, mental, and social wellbeing. For people with kidney failure receiving hemodialysis, addressing...

Introduction Patient‐centred care (PCC) has come to the forefront for many institutions, funding agencies and clinicians, and is integrated into care. Does a disconnect in understanding still exist between patients, healthcare organizations and clinicians in what PCC means and how outstanding issues might be addressed? Methods We conducted intervi...

Introduction Patient engagement in youth mental health research has the potential to inform research on the interventions, services and policies that will benefit youth. At present, there is little evidence to guide mental health researchers on youth engagement. This systematic review aims to describe the impacts of youth engagement on mental healt...

Plain English summary Person-centred care (PCC) is a model of care where patient needs and preferences are included in decisions about care and treatment. To improve PCC in primary care in Alberta, Canada, we plan to use person-centred quality indicators (PC-QIs). Using PC-QIs involves surveying patients about their care experiences and using this...

Background: During the height of the pandemic, primary care clinics were shuttered or only seeing urgent cases. Virtual consultations were adopted to ensure patients had their health concerns met. This study sought to explore the primary care experiences of older adult patients during the COVID-19 pandemic, specifically the impact of COVID-19 on th...

Background Patient-reported outcome measures (PROMs) play an important role in promoting and supporting patient and family-centered care (PFCC). To deliver, improve, and sustain PFCC, it is crucial to empower children, families, and communities to identify their self-reported outcomes and experiences with the care received. PROMs play an important...

Background Palliative care (PC) is an added layer of support provided concurrently with cancer care and serves to improve wellbeing and sustain quality of life. Understanding what is meaningful and a priority to patients, their families, and caregivers with lived experience of cancer and PC is critical in supporting their needs and improving their...

The ability of hospitals and health systems to learn from those who use its services (i.e., patients and families) is crucial for quality improvement and the delivery of high-quality patient-centered care. To this end, many hospitals and health systems regularly collect survey data from patients and their families, and are engaged in activities to...

Albertans4HealthResearch, supported by the Alberta Strategy for Patient-Oriented Research Patient Engagement Team, hosted a virtual round table discussion to develop a list of considerations for successful partnerships in patient-oriented research. The group, which consists of active patient partners across the Canadian province of Alberta and some...

Background Children’s exposure to toxic stress (e.g., parental depression, violence, poverty) predicts developmental and physical health problems resulting in health care system burden. Supporting parents to develop parenting skills can buffer the effects of toxic stress, leading to healthier outcomes for those children. Parenting interventions tha...

Background Patient-reported outcome measures (PROMs) play an important role in promoting and supporting patient and family-centered care. Implementing interventions like PROMs in routine clinical care require key stakeholders to change their behavior. The aim of this study was to utilize the Theoretical Domains Framework (TDF) to identify barriers...

Objectives To ensure optimal implementation of person-centred quality indicators (PC-QIs), we assessed the readiness of Canadian healthcare organisations and explored their perceived barriers and facilitators to implementing and using PC-QIs. Design Mixed methods. Setting and participants Representatives of Canadian healthcare delivery and coordi...

Primary Health Care is a gateway of healthcare services. The COVID-19 pandemic has modified the process of delivering care. We aimed to assess Albertan's healthcare experiences during the pandemic and compared experiences between Albertans that were born in and outside Canada. A cross-sectional online survey (experiences and impacts of COVID-19) wa...

Background Community-based health care (CBHC) is a shift towards healthcare integration and community services closer to home. Variation in system approaches harkens the need for a conceptual framework to evaluate outcomes and impacts. We set out to develop a CBHC-specific evaluation framework in the context of a provincial ministry of health plann...

Background Engaging patients in health care, research and policy is essential to improving patient‐important health outcomes and the quality of care. Although the importance of patient engagement is increasingly acknowledged, clinicians and researchers still find it difficult to engage patients, especially paediatric patients. To facilitate the eng...

Objectives Our objective was to validate a Social Vulnerabilities Survey that was developed to identify patient barriers in the following domains: (1) salience or priority of health; (2) social support; (3) transportation; and (4) finances. Design Cross-sectional psychometric study. Questions for one domain (health salience) were developed de novo...

Introduction Patient engagement in healthcare research is a necessity to ensure that research objectives align with priorities, outcomes and needs of the population under study, and to facilitate ease of implementation and adoption of findings. In clinical trials, there is an increasing focus on patient engagement during the planning and conduct of...

e24097 Background: Timely palliative care interventions can help to alleviate the distress people experience after a diagnosis of an incurable, life-threatening cancer. However, referrals to palliative care continue to be late due to various provider and patient barriers. The Palliative Care Early and Systematic (PaCES)-Automatic study was co-desig...

Objective: In Alberta, the Alberta Paediatric Inpatient Experience Survey (APIES) is used as a proxy-reported measure of paediatric experience. To our knowledge, the influence of casemix factors on patient experience as measured by paediatric patient experience surveys have not been reported within Canadian paediatric samples. In this paper, we so...

PurposeThe Seattle Angina Questionnaire (SAQ) is a widely used patient-reported measure of health status in patients with coronary artery disease. Comparisons of SAQ scores amongst population groups and over time rely on the assumption that its factorial structure is invariant. This study evaluates the measurement invariance of the SAQ across diffe...

Background The Palliative Care Early and Systematic (PaCES) program implemented an early palliative care pathway for advanced colorectal cancer patients in January 2019, to increase specialist palliative care consultation and palliative homecare referrals more than three months before death. This study aimed to understand the experience of patients...

Little is known about the experiences of those hospitalized during the COVID-19 pandemic in Canada. Our aims were to (a) report on the experiences, (b) compare with historical results, and (c) assess for potential monthly differences of patients hospitalized in the early months of the COVID-19 across Alberta. A random sample of adults was surveyed...

Introduction: Patient-reported Experience Measures (PREMs) are validated questionnaires, that gather patients' and families' views of their experience receiving care and are commonly used to measure the quality of care, with the goal to make care more patient and family-centered. PREMs are increasingly being adopted in pediatric population, however...