Julia Abelson
Biographic Data
| ID | 3889983 |
|---|---|
| NAME | Julia Abelson |
| GIVEN NAMES | Julia |
| FAMILY NAME | Abelson |
| SIGNATURE | ABELSON J |
| AFFILIATIONS | McMaster University |
| ORCID | 0000-0002-2907-2783 |
| VERIFIED | Yes |
| TOTAL WORKS | 61 |
| TOTAL CITATIONS | 373 |
| AUTHOR COUNT | 61 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2001 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 10 |
Family Caregivers’ Perspectives on Direct Financial Support Programs: A Qualitative Exploration of Nova Scotia’s Caregiver Benefit
Background and Objective This study examines how intensive caregivers in Nova Scotia who receive the provincial government’s Caregiver Benefit interpret and experience the program, particularly in the context of its ambiguous goals. Methods A qualitative descriptive methodological design was used to ensure that the reporting of findings remained close to participants’ own words and to emphasize the practicality of findings. Twenty family caregive…
Public perspectives on ethical issues in lung cancer screening policy design and implementation in Ontario, Canada
Public views on cancer screening ethical issues may contribute to policymaking. • Screening programs are being implemented to reduce lung cancer mortality. • This research examined public views on lung cancer screening ethical issues. • Participants supported high-risk screening, except for people who currently smoke. • Screening policies should more effectively mitigate smoking stigma. Public perspectives on ethical issues in cancer screening ma…
Evaluating the impact of engagement: An introduction to the Engage with Impact Toolkit
Introduction: Patient and public engagement and involvement has become embedded in many sectors of the health system internationally, from research to health system governance. There is growing interest in understanding how to evaluate the impact of this engagement on individuals involved, organizations, programs and on health outcomes but few tools are available to support this work. To meet this need, we developed the Engage with Impact Toolkit…
Creating engagement capable environments for healthcare transformation: A framework for action
Introduction: Engaging and partnering with patients, caregivers and communities is a key building block for integrated care and health system transformation, yet many organizations lack the skills or capacity to do this work well, and with a focus on creating engagement capable environments. Why Are You Conducting A Workshop? While many health system organizations are committed to engaging and partnering with patients, caregivers and communities,…
Stakeholder participation in the Covid-19 pandemic preparedness and response plans: A synthesis of findings from 70 countries
A global comparative analysis of the the inclusion of priority setting in national Covid-19 pandemic plans: A reflection on the methods and the accessibility of the plans
Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life
BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences arou…
Building Engagement‐Capable Environments for Health System Transformation: Development and Early Implementation of a Capability Framework for Patient, Family and Caregiver Engagement in Ontario Health…
INTRODUCTION: Despite widespread calls to involve patients, families and caregivers (PFCs) as partners at all levels of health system planning and design, there is unevenness in how engagement efforts are supported across these settings. The concept of 'engagement-capable environments' offers a way forward to uncover the key requirements for sustainable, high-quality engagement, but more work is needed to identify the specific competencies requir…
Patient partner perspectives on compensation: Insights from the Canadian Patient Partner Survey
INTRODUCTION: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one-time honorarium, salary) and amount. Further, broad-based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation pat…
Public Engagement in Health Policy‐Making for Older Adults: A Systematic Search and Scoping Review
INTRODUCTION: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy-making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagem…
Was priority setting included in the Canadian Covid-19 pandemic planning and preparedness? A comparative analysis of Covid-19 pandemic plans from eight provinces and three territories
Exploring meanings of expert and expertise in patient engagement activities: A qualitative analysis of a pan-Canadian survey
In this paper, we engage with claims of expert identities within the field of patient engagement. We do so through analysis of a subset of data collected as part of a 2020 pan-Canadian survey of patient partners. Our analysis is based on 446 qualitative responses to one target question: “Do you think the lived experience you bring to your patient partner role makes you an expert? Please explain in the box below”. Most respondents answered “yes” (…
Development of the Engage with Impact Toolkit: A comprehensive resource to support the evaluation of patient, family and caregiver engagement in health systems
INTRODUCTION: Recent shifts in the patient, family and caregiver engagement field have focused greater attention on measurement and evaluation, including the impacts of engagement efforts. Current evaluation tools offer limited support to organizations seeking to reorient their efforts in this way. We addressed this gap through the development of an impact measurement framework and accompanying evaluation toolkit-the Engage with Impact Toolkit. M…
Access to novel drugs and therapeutics for children and youth: Eliciting citizens' values to inform public funding decisions
INTRODUCTION: The unique evidentiary, economic and ethical challenges associated with health technology assessment (HTA) of precision therapies limit access to novel drugs and therapeutics for children and youth, for whom such challenges are amplified. We elicited citizens' perspectives about values-based criteria relevant to the assessment of paediatric precision therapies to inform the development of a child-tailored HTA framework. METHODS: We …
A Multilevel Framework for Complex Care: A Critical Interpretive Synthesis
Health systems are poorly equipped to respond to complex health and social needs, which span sectors and diagnoses. This study puts forward a framework for complex care policy. The framework was developed using critical interpretive synthesis, a method for developing theory on the basis of a transparent search and critical analysis of a heterogenous body of the literature. Seventy-three results were included from a systematic search. We suggested…
Diverse Discussion in Public Deliberation on Cancer Drug Funding
Structured deliberations among members of the public are increasingly viewed as useful inputs to health policy decisions that also rely on scientific evidence and expertise. Such deliberations typically aim for discussions that explore a diversity of ideas and perspectives. However, the concept of a diverse discussion has not been thoroughly examined and methods for measuring the extent to which a discussion actually was diverse are lacking. In t…
The impact of Covid‐19 on patient engagement in the health system: Results from a Pan‐Canadian survey of patient, family and caregiver partners
INTRODUCTION: The COVID-19 pandemic has had an impact on all aspects of the health system. Little is known about how the activities and experiences of patient, family and caregiver partners, as a large group across a variety of settings within the health system, changed due to the substantial health system shifts catalysed by the pandemic. This paper reports on the results of a survey that included questions about this topic. METHODS: Canadian pa…
Priority setting and equity in Covid-19 pandemic plans: A comparative analysis of 18 African countries
Priority setting represents an even bigger challenge during public health emergencies than routine times. This is because such emergencies compete with routine programmes for the available health resources, strain health systems and shift health-care attention and resources towards containing the spread of the epidemic and treating those that fall seriously ill. This paper is part of a larger global study, the aim of which is to evaluate the degr…
Priority setting during the Covid-19 pandemic: Going beyond vaccines
Development of vaccines is a major breakthrough in the fight against the SARS-CoV-2 virus. Much attention has been paid to how to prioritise between patient groups for vaccination and how to ensure equity, especially in low-income countries, but there are other important decisions that need to be made. These decisions include: (a) choosing between the various vaccines that will become available, (b) continuing to invest in other aspects of the CO…
The Moral Foundations of Child Health and Social Policies: A Critical Interpretive Synthesis
Foundational understanding of the moral language and dominant policy frames applied to children can enrich analyses of social policies for children. Most societies paint children as potent, vulnerable, entitled, and embedded. It is the admixture of these elements in particular policy spheres, across distinct places and times, that often determines the form of a given policy and societal reactions to it. Subsequent work in this area will need to d…
Does moral reasoning influence public values for health care priority setting: A population-based randomized stated preference survey
Applying priority-setting frameworks: A review of public and vulnerable populations’ participation in health-system priority setting
Priority measures for publicly reporting primary care performance: Results of public engagement through deliberative dialogues in 3 Canadian provinces
OBJECTIVE: While public reporting of hospital-based performance measurement is commonplace, it has lagged in the primary care sector, especially in Canada. Despite the increasing recognition of patients as active partners in the health-care system, little is known about what information about primary care performance is relevant to the Canadian public. We explored patient perspectives and priorities for the public reporting of primary care perfor…
The problem is small enough, the problem is big enough’: A qualitative study of health technology assessment and public policy on drug funding decisions for children
Current approaches to health technology assessment are not well calibrated to the realities of child health and illness. Our study presents a nuanced and contextually grounded analysis of concepts instrumental to drug funding decisions for children. The insights generated are directly applicable to the Canadian and Ontario contexts, but also yield fundamental knowledge about HTA for children that are germane to drug policy in other health systems
Citizen perspectives on the use of publicly reported primary care performance information: Results from citizen‐patient dialogues in three Canadian provinces
OBJECTIVE: Performance measurement and reporting is proliferating in all sectors of the healthcare system, including primary care, despite a dearth of evidence on how the public uses reports on primary care performance. We explored how the public might use this information, to guide the development of effective reporting systems for primary care. METHODS: We conducted six full-day deliberative dialogue sessions with a purposive sample of 56 citiz…
Deliberations about deliberative methods: Issues in the Design and Evaluation of Public Participation Processes
The public is too subjective: Public Involvement at Different Levels of Health-Care Decision Making
Understanding the role of contextual influences on local health-care decision making: Case study results from Ontario, Canada
Deliberative dialogues as a mechanism for knowledge translation and exchange in health systems decision-making
The unbearable lightness of citizens within public deliberation processes
It all depends: Conceptualizing public involvement in the context of health technology assessment agencies
Examining the role of context in the implementation of a deliberative public participation experiment: Results from a Canadian comparative study
Are we expecting too much from print media? An analysis of newspaper coverage of the 2002 Canadian healthcare reform debate
What is important to continuity in home care
Research use in children's mental health policy in Canada: Maintaining vigilance amid ambiguity
Obtaining public input for health‐systems decision‐making: Past experiences and future prospects
Interest in finding more effective methods for public involvement in decision‐making about health systems is more widespread than ever in Canada since significant aspects of health‐care decision‐making were devolved from provincial governments to regional health authorities. Involving the public can be risky business, however, as the accountability and legitimacy of decisions made by governing authorities are often assessed against the nature and…
Why do policies change? Institutions, interests, ideas and networks in three cases of policy reform
Policy researchers have used various categories of variables to explain why policies change, including those related to institutions, interests and ideas. Recent research has paid growing attention to the role of policy networks-the actors involved in policy-making, their relationships with each other, and the structure formed by those relationships-in policy reform across settings and issues; however, this literature has largely ignored the theo…
Eliciting ethical and social values in health technology assessment: A participatory approach
Conceptualizing the use of public involvement in health policy decision-making
Integrating public input into healthcare priority-setting decisions
Decision makers are pressed to involve the public in priority setting. However, public input is only one form of evidence. So, how can information from the public be combined with other knowledge? The authors qualitatively analysed articles that explicitly address this question. We identified the other forms of information that tend to be used in conjunction with public input, the degree to which members of the public are asked to be the integrat…
Who is in and who is out? A qualitative analysis of stakeholder participation in priority setting for health in three districts in Uganda
Stakeholder participation is relevant in strengthening priority setting processes for health worldwide, since it allows for inclusion of alternative perspectives and values that can enhance the fairness, legitimacy and acceptability of decisions. Low-income countries operating within decentralized systems recognize the role played by sub-national administrative levels (such as districts) in healthcare priority setting. In Uganda, decentralization…
Evidence-informed policymaking and policy innovation in a low-income country: Does policy network structure matter
The application of social network analysis to policy networks continues to grow, including the application of social network analysis tools and concepts in order to explain policy outcomes. Gaps in this field of study persist in terms of both policy issues studied, as well as types of polities or networks analysed. This study extends previous research on the role of network structure in shaping policy outcomes by analysing network structure’s eff…
Une expérience de consultation publique délibérative dans Charlevoix
Les méthodes de consultation publique qui favorisent la délibération et le dialogue entre citoyens et décideurs ont donné lieu à un grand nombre d'études dans les dernières années. L'expérience de participation analysée dans cet article s'inscrit dans ce courant. Des citoyens de la région de Charlevoix ont été invités à examiner et à débattre du financement des programmes locaux de santé et de services sociaux à l'occasion d'une série de « panels…
The value of frameworks as knowledge translation mechanisms to guide community participation practice in Ontario CHCs
A response to Martin on the role of citizens, publics and others in participatory processes
Understanding the role of contextual influences on local health-care decision making: Case study results from Ontario, Canada
Obtaining public input for health‐systems decision‐making: Past experiences and future prospects
Interest in finding more effective methods for public involvement in decision‐making about health systems is more widespread than ever in Canada since significant aspects of health‐care decision‐making were devolved from provincial governments to regional health authorities. Involving the public can be risky business, however, as the accountability and legitimacy of decisions made by governing authorities are often assessed against the nature and…
The public is too subjective: Public Involvement at Different Levels of Health-Care Decision Making
How Can Research Organizations More Effectively Transfer Research Knowledge to Decision Makers?
A pplied research organizations invest a great deal of time, and research funders invest a great deal of money generating and (one hopes) transferring research knowledge that could inform decisions about health and health care. Basing these knowledge‐transfer activities on our evolving understanding of the most effective approaches to knowledge transfer will help us achieve value for money in our individual and collective investments in health se…
Deliberations about deliberative methods: Issues in the Design and Evaluation of Public Participation Processes
What is important to continuity in home care
Une expérience de consultation publique délibérative dans Charlevoix
Les méthodes de consultation publique qui favorisent la délibération et le dialogue entre citoyens et décideurs ont donné lieu à un grand nombre d'études dans les dernières années. L'expérience de participation analysée dans cet article s'inscrit dans ce courant. Des citoyens de la région de Charlevoix ont été invités à examiner et à débattre du financement des programmes locaux de santé et de services sociaux à l'occasion d'une série de « panels…
From rhetoric to reality: Including patient voices in supportive cancer care planning
Objective To explore the extent and manner of patient participation in the planning of regional supportive care networks throughout the province of Ontario. We consider the disconnect between the rhetoric and reality of patient involvement in network planning and co‐ordination. Context In 1997, the Province of Ontario, Canada, established a new, regionalized cancer care system. By transferring responsibility to the regional level and to networks,…
Research use in children's mental health policy in Canada: Maintaining vigilance amid ambiguity
Are we expecting too much from print media? An analysis of newspaper coverage of the 2002 Canadian healthcare reform debate
Mental health service delivery in Ontario, Canada: How do policy legacies shape prospects for reform?
Like many jurisdictions, mental health policy-making in Ontario, Canada, has a long history of frustrated attempts to move from a hospital and physician-based tradition to a coordinated system with greater emphasis on community-based mental health care. This study examines policy legacies associated with the introduction of psychiatric hospitals in the 1850s and of public health insurance (medicare) in the 1960s in Ontario; and their effect on su…
Balancing rigour and relevance: Researchers’ contributions to children’s mental health policy in Canada
English We investigated researchers’ experiences of, and views on, interacting with policy makers, using children’s mental health as an example. Qualitative methods were used to interview university researchers, policy researchers, and research funders. Participants spoke of contributions to policy that went beyond interaction with policy makers. We describe how participants became motivated, developed approaches, and created new environments to …
Examining the role of context in the implementation of a deliberative public participation experiment: Results from a Canadian comparative study
Public participation in health care priority setting: A scoping review
Aux sciences, citoyens !: Expériences et méthodes de consultation sur les enjeux scientifiques de notre temps
Ce livre décrit plus de 25 expériences de consultation et de participation, réalisées au Québec et ailleurs dans le monde, touchant les enjeux scientifiques les plus divers. Couronnées de succès ou pas, ces expériences sont toujours instructives. C'est pourquoi les auteurs proposent aussi un répertoire des méthodes et des moyens utilisés pour en évaluer la pertinence et l'efficacité.
It all depends: Conceptualizing public involvement in the context of health technology assessment agencies
The integration of citizens into a science/policy network in genetics: Governance arrangements and asymmetry in expertise
OBJECTIVE While there are increasing calls for public input into health research and policy, the actual obtaining of such input faces many challenges in practice. This article examines how a Canadian science/policy network in the field of genetics integrated citizens into its structure and then managed their participation. METHODS Our ethnographic case study covers a 5-year period (2003-08) and combines four data sources: observations of the netw…
Integrating public input into healthcare priority-setting decisions
Decision makers are pressed to involve the public in priority setting. However, public input is only one form of evidence. So, how can information from the public be combined with other knowledge? The authors qualitatively analysed articles that explicitly address this question. We identified the other forms of information that tend to be used in conjunction with public input, the degree to which members of the public are asked to be the integrat…
Eliciting ethical and social values in health technology assessment: A participatory approach
The Future of Public Deliberation on Health Issues
Why and When Should We Use Public Deliberation
Public deliberation is an approach policy-makers can use to tackle public policy problems that require the consideration of both values and evidence. However, there is much uncertainty about why and when to choose it rather than more familiar approaches, such as public opinion polls or expert panels. With guidance on the why and when of public deliberation, policy-makers can use it appropriately to inform public policy
What Is Public Deliberation
A response to Martin on the role of citizens, publics and others in participatory processes
Deliberative dialogues as a mechanism for knowledge translation and exchange in health systems decision-making
The unbearable lightness of citizens within public deliberation processes
Political science (53 works) · Medicine (39 works) · Public relations (34 works) · Sociology (33 works) · Health care (29 works) · Psychology (27 works) · Nursing (25 works) · Computer Science (23 works) · Mental Health and Patient Involvement (22 works) · Public health (21 works)