scholarly journals Policy advocacy to enable administrative data linking: building a civil society coalition

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Michael Lenczner ◽  
Jonathan McPhedran Waitzer
Keyword(s):  
Administrative Data ◽  
Impact Evaluation ◽  
Policy Development ◽  
Service Providers ◽  
Nonprofit Sector ◽  
Political Commitment ◽  
Advocacy Groups ◽  
Data Governance ◽  
Social License ◽  
Multi Stakeholder

IntroductionAdministrative data linking holds tremendous promise for improving understanding of social problems, enhancing service delivery, and revolutionizing impact evaluation in Canada. Embracing this opportunity at scale requires navigation of significant technical and policy challenges. The greatest challenge, though, may be a lack of political will. Objectives and ApproachThe nonprofit sector is uniquely positioned to advocate for a strong political commitment to linked administrative data. As a sector, it could directly benefit from that data for impact evaluation and for advocacy. It is also closest to the people who are most likely to be negatively impacted by the resulting surveillance and stigmatization. We are building a network of social service organizations, foundations, and advocacy groups to explore the possibility of creating a shared policy agenda. We’ve developed a coalition model that engages these unequally resourced stakeholders on equal footing - with the goal of enabling fully-informed and equitable participation. ResultsThis coalition is working to develop a set of conditions for increased administrative data linking that reflect the shared interests of funders, service providers, advocacy groups, and beneficiary communities. We are also researching the legislative and policy changes required to enable that desired outcome. In developing this agenda, and bringing it to government, we hope to provide the social license (and public pressure) required to create an enabling policy environment for increased data linking in Canada. Beyond developing a shared agenda, this initiative also aims to deliver long-term outcomes involving increased data policy literacy among Canadian nonprofits. This coalition represents collaborative infrastructure to enable ongoing, coordinated input from the nonprofit sector on key questions of data governance and policy. Conclusion/ImplicationsThis equity-focused, multi-stakeholder coalition approach to digital policy development represents a significant innovation in public engagement. We’re excited to share our process and key learnings with conference participants with hopes of receiving expert feedback while inviting key allies to engage in this emerging initiative.

scholarly journals Developing Best Practice in Linking and Sharing Administrative Data – A Comparison of Views in Health and Higher Education

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Jackie Street ◽  
Annette Braunack-Mayer ◽  
Stacy Carter ◽  
Tam Ha ◽  
Xiaoqi Feng ◽  
...  
Keyword(s):  
Higher Education ◽  
Administrative Data ◽  
Policy Development ◽  
Best Practice ◽  
Ethical Issues ◽  
Health Sector ◽  
Clear Understanding ◽  
Data Governance ◽  
Sensitive Data ◽  
Wide Range

IntroductionLarge administrative datasets are now being used for secondary purposes across a wide range of public sector organisations, including in health and higher education. However, governance, regulation and policy surrounding the use of these datasets are at different stages of development in these sectors. Our aim was to explore similarities and differences in the use of administrative data between the health and higher education sectors to inform policy development. Objectives and ApproachWe investigated views on the use of administrative data in both the health and higher education sectors. We conducted 18 qualitative in-depth interviews with key stakeholders, to provide insight into the ethical, social and legal issues associated with the use of big data in these settings. The interviews were transcribed and thematically coded. ResultsParticipants indicated the rapid pace of technological change and large volume of potentially sensitive data collected raises governance, infrastructure and ethical issues in both settings. Common challenges include communication, staff capabilities, delays in access, multiple policies and governance committees, and technical and operational issues. In the health sector, there was clear understanding of the issues and governance structures to address these issues, whereas this understanding was more variable in the higher education sector. Trust in government (to use responsibly and store securely) was raised in the health sector but not in universities. Conclusion / ImplicationsUnderstanding and use of administrative data are at quite different levels of development in the higher education and health sectors. Higher education needs policy and ethical guidance and higher level governance and greater consultation across the sector. Both sectors would benefit from a national approach to data governance.

scholarly journals EPODE – A Model for Reducing the Incidence of Obesity and Weight-related Comorbidities

2010 ◽  
Vol 9 (2) ◽  
pp. 116 ◽  
Author(s):  
J-M Borys ◽  
L Valdeyron ◽  
E Levy ◽  
J Vinck ◽  
D Edell ◽  
...  
Keyword(s):  
Childhood Obesity ◽  
Large Scale ◽  
Political Commitment ◽  
Obesity Prevalence ◽  
Public And Private ◽  
Global Epidemic ◽  
Critical Components ◽  
Multi Stakeholder ◽  
Lifestyle Related Diseases ◽  
Public And Private Partnerships

Obesity is a global epidemic: it is estimated that the majority of the world’s adults will be overweight or obese by 2030. It is therefore important to reverse trends towards increasing childhood obesity by interventions at the community level. Ensemble Prévenons l’Obésité Des Enfants (EPODE, Together Let’s Prevent Childhood Obesity) is a large-scale, coordinated, capacity-building approach for communities to implement effective and sustainable strategies to address this challenge. EPODE comprises four critical components: political commitment, public and private partnerships, community-based actions, and evaluation. The multi-stakeholder approach promoted through the EPODE methodology has already shown encouraging results in preventing childhood obesity in France and Belgium and has reduced the socioeconomic gap in obesity prevalence in France. The EPODE methodology has now been implemented in a number of countries worldwide, and provides a valuable model that may be applicable to other lifestyle-related diseases.

scholarly journals Who Are the Key Players Involved with Shaping Public Opinion and Policies on Obesity and Diabetes in New Zealand?

Nutrients ◽  
2018 ◽  
Vol 10 (11) ◽  
pp. 1592
Author(s):  
Willemijn de Bruin ◽  
Cherie Stayner ◽  
Michel Lange ◽  
Rachael Taylor
Keyword(s):  
Public Opinion ◽  
New Zealand ◽  
Policy Development ◽  
Service Providers ◽  
Decision Makers ◽  
Health Service Providers ◽  
Beverage Industry ◽  
Obesity And Diabetes ◽  
Food And Beverage ◽  
Diabetes And Obesity

There is an urgent need for strategic approaches to address the high prevalence of obesity and diabetes in New Zealand. Such approaches rely strongly on input from multiple actors in the diabetes and obesity policy space. We conducted a social network analysis to identify influential actors involved with shaping public opinion and/or policy regarding obesity and diabetes in New Zealand. Our analysis revealed a diverse network of 272 individuals deemed influential by their peers. These individuals represented nine professional categories, particularly academics (34%), health service providers (22%), and government representatives (17%). The network included a total of 17 identified decision-makers. Relative capacity of professional categories to access these decision-makers was highest for representatives of the food and beverage industry (25%), compared with nongovernment organisations (9%) or academics (7%). We identified six distinct brokers, in academic (n = 4), government (n = 1), and nongovernmental (n = 1) positions, who could play a key role in improving communication and networking activities among all interest groups. Such actions should ultimately establish effective networks to foster evidence-based policy development to prevent and reduce the burden of diabetes and obesity.

scholarly journals ASSESSMENT OF NUTRITION ADVOCACY IN SOMALIA REPORT: GAPS, OPPORTUNITIES AND KEY MESSAGES

2021 ◽  
Vol 6 (2) ◽  
pp. 1-9
Author(s):  
George Ouma ◽  
Farah Mohamed ◽  
Gilbert Rithaa ◽  
Mohamed Hassan
Keyword(s):  
Policy Development ◽  
Prime Minister ◽  
Unique Contribution ◽  
Political Commitment ◽  
Nutrition Interventions ◽  
Review Analysis ◽  
New Findings ◽  
Challenges And Opportunities ◽  
Governmental Institutions

Purpose: This inception report on the comprehensive assessment through desk reviews and analysis nutrition gaps in policy, political commitment, resource allocation and multi-sectoral coordination to inform the development of guideline and messages. This is as a follow-up of preliminary discussion held and concept agreed with the office of the national coordination for Scaling Up Nutrition (SUN), Somalia housed in the Office of Prime Minister (OPM), Federal Government of Somalia. This summary report presents findings from the assessment and a discussion of methodology, challenges and opportunities. By identifying and contextualizing new findings, nutrition advocacy assessment builds consensus in Somalia with a vision and path ahead for improved nutrition messaging and guidelines that various actors will use of advocacy work. Methodology: 30 documents were gathered and reviewed, including - national legislation, policies, guidelines, strategies and action plans to assess the inclusion of adolescents and current gaps. Interviews were conducted with 20 stakeholders from government, donors, UN, communities and non-governmental institutions in Somalia. The review, analysis and stakeholder interviews assessed the extent to which nutritional aspects were being addressed, any gaps in the policy landscape, commitments, multi-sectoral coordination, advocacy initiatives and recommendations for strengthening the enabling environment. Findings: It was established that awareness of SUN as a movement in Somalia was rated highly at however participation in SUN activities was very low and was left to nutritionist in the various sector/Institutions. Government has also shown a great political will and commitment to nutrition by ensuring policies and legislative frameworks are sufficient even though multi-sectoral nutrition integration is not optimal to impact desired impact. Unique contribution to theory, practice and policy: It was recommended that there is need to advocate political and administrative authorities, to further convince them to add nutrition among the top priorities of the governments, translate policies into actions and ensure allocation of funds for nutrition interventions. Also, Government must strongly provide leadership in nutrition policy development, programing and coordination.

scholarly journals Linked government administrative data: Public or Private?

2019 ◽  
Vol 4 (3) ◽  
Author(s):  
Joel Stafford
Keyword(s):  
Public Good ◽  
Communication Networks ◽  
Administrative Data ◽  
Public Service ◽  
Policy Development ◽  
Data Linkage ◽  
The Public ◽  
Government Services ◽  
Service Contracts ◽  
Public Data

Background with rationaleIt is commonplace in policy discussions concerning administrative data linkage to presuppose that the data referred to is government services data. But this is not always the case. Much of the data public services hold is now collected via intermediaries, such as Non-Government Organisations, operating under service contracts with one or multiple government departments. Nor are these the only administrative data holdings applicable to clients of government services. There are also vast private administrative data holdings – including utility data, and consumer behaviour data. Creating and amending legislation that governs public service practices in this domain is increasingly made complex when private companies partner with governments agencies on policy development and evaluation work. Understanding the concept of public data for public good in light of this expanded sense of administrative data opens the door to deeper questions about the role linked data can play in government decision making. Main aimThe paper problematizes how legislation governing the linking of government administrative data is scoped and discusses how public service work can be affected by the opaque communication networks that increasingly span the public-private sector divide. Methods/ApproachAfter contextualising the challenge of legislating for administrative data linkage in the current work of the Office of the National Data Commissioner (ONDC) in Australia, this paper tests aspects of the proposed legislation against the extent to which it permits the possibility of ‘data laundering’. ResultsThe presentation demonstrates the need for greater sophistication in the specification of data linkage and sharing legislation in service of the public good. Conclusions This paper indicates that contemporary practices governing the linkage of government administrative data holdings is porous to the aims of extra-governmental organisations and may benefit by better incorporating legislative structures that govern private analytical services entities.

scholarly journals Barriers to accrual and enrollment in brain tumor trials.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 2024-2024 ◽  
Author(s):  
Eudocia Quant Lee ◽  
Ugonma Nnenna Chukwueke ◽  
Shawn L. Hervey-Jumper ◽  
John Frederick De Groot ◽  
Jose Pablo Leone ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Response Assessment ◽  
Patient Advocacy ◽  
Cooperative Groups ◽  
Advocacy Groups ◽  
Oncology Patient ◽  
Clinical Trial Accrual ◽  
Multi Stakeholder ◽  
Patient Advocacy Groups ◽  
Major Impediment

2024 Background: A major impediment to improving neuro-oncology outcomes is poor clinical trial accrual. Methods: We convened a multi-stakeholder group including Society for Neuro-Oncology, Response Assessment in Neuro-Oncology, patient advocacy groups, clinical trial cooperative groups, and other partners to determine how we can improve trial accrual. Results: We describe selected factors contributing to poor trial accrual and possible solutions. Conclusions: We will implement strategies with the intent to double trial accrual over the next 5 years. [Table: see text]

The digital traveller: implications for data ethics and data governance in tourism and hospitality

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Anca C. Yallop ◽  
Oana A. Gică ◽  
Ovidiu I. Moisescu ◽  
Monica M. Coroș ◽  
Hugues Séraphin
Keyword(s):  
Big Data ◽  
The Body ◽  
Data Governance ◽  
Privacy And Security ◽  
Content Type ◽  
Data Ethics ◽  
Data Framework ◽  
Social License ◽  
Governance Practices ◽  
Tourism And Hospitality

Purpose Big data and analytics are being increasingly used by tourism and hospitality organisations (THOs) to provide insights and to inform critical business decisions. Particularly in times of crisis and uncertainty data analytics supports THOs to acquire the knowledge needed to ensure business continuity and the rebuild of tourism and hospitality sectors. Despite being recognised as an important source of value creation, big data and digital technologies raise ethical, privacy and security concerns. This paper aims to suggest a framework for ethical data management in tourism and hospitality designed to facilitate and promote effective data governance practices. Design/methodology/approach The paper adopts an organisational and stakeholder perspective through a scoping review of the literature to provide an overview of an under-researched topic and to guide further research in data ethics and data governance. Findings The proposed framework integrates an ethical-based approach which expands beyond mere compliance with privacy and protection laws, to include other critical facets regarding privacy and ethics, an equitable exchange of travellers’ data and THOs ability to demonstrate a social license to operate by building trusting relationships with stakeholders. Originality/value This study represents one of the first studies to consider the development of an ethical data framework for THOs, as a platform for further refinements in future conceptual and empirical research of such data governance frameworks. It contributes to the advancement of the body of knowledge in data ethics and data governance in tourism and hospitality and other industries and it is also beneficial to practitioners, as organisations may use it as a guide in data governance practices.

scholarly journals City Data Plan: The Conceptualisation of a Policy Instrument for Data Governance in Smart Cities

Urban Science ◽  
2019 ◽  
Vol 3 (3) ◽  
pp. 91
Author(s):  
Lucia Lupi
Keyword(s):  
Smart City ◽  
Smart Cities ◽  
Methodological Approach ◽  
Policy Instrument ◽  
City Development ◽  
Data Governance ◽  
Analytic Process ◽  
Development Goals ◽  
Multi Stakeholder ◽  
The City

This paper presents the conceptualisation of the City Data Plan, a data governance policy instrument intended to connect the production and use of urban data in a comprehensive and evolutive long-term strategy aligned with city development goals. The concept of the City Data Plan had been elaborated by taking into account current issues related to privacy and manipulation of data in smart city. The methodological approach adopted to define the nature of a City Data Plan is grounded on the conceptual and empirical parallelism with corporate data governance plans and general urban plans, respectively aimed to regulate decision-making powers and actions on data in enterprise contexts, and the interests of local stakeholders in the access and use of urban resources. The result of this analytic process is the formulation of the outline of a City Data Plan as a data governance policy instrument to support the iterative negotiation between the instances of data producers and data users for instantiating shared smart city visions. The conceptualisation of the City Data Plan includes a description of the multi-stakeholder organisational structures for the city data governance, cooperation protocols and decision areas, responsibilities assignments, components of the plan and its implementation mechanisms.

scholarly journals “We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Caroline Jose ◽  
Patricia George-Zwicker ◽  
Louise Tardif ◽  
Aaron Bouma ◽  
Darlene Pugsley ◽  
...  
Keyword(s):  
Design Research ◽  
Service Providers ◽  
Well Being ◽  
Research Process ◽  
Autism Spectrum ◽  
Project Leadership ◽  
Team Meetings ◽  
Autistic Adults ◽  
Data Gap ◽  
Multi Stakeholder

Abstract Background Little research describes the everyday challenges and needs of autistic adults. In order to fill this data gap, the CONtiNuity of carE and support for autistiC adulTs (CONNECT) project set out to learn about the health and well-being of autistic adults as well as their service and support needs. To do so, CONNECT welcomed autistic adults and caregivers of autistic adults as members of the research team, alongside researchers, policy-makers, service providers and health professionals. Autistic adults were involved in every stage of the research project and participated in team meetings held several times a year as well as in numerous email exchanges. Methods Two feedback questionnaires were designed for this study: one for the scientific co-researchers and one for the autism community co-researchers (the project’s “patient partners”). Although the surveys varied from one another, they probed respondents to provide critical and constructive comments on issues that were central to their engagement in CONNECT. Four scientific co-researchers and four autism community co-researchers filled out the questionnaires. A comparative analysis was carried out on the responses provided to the open- and closed-ended survey questions as well as on complimentary data collected from the team’s documents. Results CONNECT was seen as a positive experience for both groups. Highlights included: helping tailor and design research and its relevant materials to better suit the needs of the autistic community; establishing relationships and creating long-lasting friendships with other autistic adults; gaining a better understanding of the research process; and forging new connections with regional, national and international stakeholders. Areas for improvement include: establishing clear roles, responsibilities and expectations from the start; outlining a strategy to address unforeseen changes in project leadership; and creating a platform allowing for the involvement and participation of a more representative sample of adults on the autism spectrum. Conclusions While not without its challenges, CONNECT demonstrates that a collaborative multi-stakeholder approach engaging autistic adults can be an effective model for conducting research on adult autism. Autistic adults and their caregivers can make the research process more open and accessible and make its outputs more relevant, useful and meaningful to the wider autistic adult community.

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