scholarly journals Getting animated about routine data: co-producing a video and toolkit with young families

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Fiona Lugg-Widger ◽  
Jeremy Segrott ◽  
Peter Gee ◽  
Joyce Kenkre ◽  
Mike Robling
Keyword(s):  
Child Protection ◽  
Home Visiting ◽  
Social Care ◽  
Data Use ◽  
Routine Data ◽  
Public Understanding ◽  
Sensitive Data ◽  
The Public ◽  
Health And Social Care ◽  
Public Views

IntroductionWhile public engagement activity in healthcare may include a focus on uses of patient data, use of social care/ education data may be relatively overlooked. The public may be less aware about how their social care data may be used. Some concepts such as benefits and risks may also differ. Objectives and ApproachOur objective is to co-produce with members of the public a package of materials that researchers may then use to promote public understanding of and engagement in research that uses routine data from health and social care settings. We are running workshops with two groups of young families (teenage mothers, some of whom have received specialist home-visiting support) to explore key concepts and messages about routine data use, including sensitive data such as maltreatment and regulatory child protection interventions. The workshop includes completing a story board for an animated video. This will be co-produced by the same young people. ResultsOur recent work with young families has shown a preference for visual based methods over text-based approaches to explain routine data linkage. This represents a key opportunity for innovation. We have explored how members of the public understand and make sense of routine data from various settings (health/social care) and its use in research. Working with a professional animator, the co-production of a prototype animation aims to engage members of the public about the nature, benefits and safeguards of using routine public records in health and social care research. The presentation will summarise the method of co-production, review the prototype animation and associated materials for researchers (‘toolkit’). Finally, we will recap key messages identified from the workshops that underpin the animation and other dissemination plans. Conclusion/ImplicationsOur existing understanding of public views (e.g. from consumer panels) may not represent well perspectives from population groups, such as teenage parents. Working with young families who may otherwise rarely engage in such work provides their unique perspectives, adding richness to our understanding of public views on routine data usage.

scholarly journals Analysis of Data Use Registers published by health data custodians in the UK

2021 ◽  
Author(s):  
Nada Karrar ◽  
Shahriar Kabir Khan ◽  
Sinduja Manohar ◽  
Paola Quattroni ◽  
David Seymour ◽  
...  
Keyword(s):  
Social Care ◽  
Data Use ◽  
Service Evaluation ◽  
Health Data ◽  
The Public ◽  
The United Kingdom ◽  
Health And Social Care ◽  
Public Record ◽  
The Uk ◽  
Research Alliance

Transparency of how health and social care data is used by researchers is crucial to building public trust. We define 'data use registers' as a public record of data an organisation has shared with other individuals or organisations for the purpose of research, innovation and service evaluation, and are used by some data custodians across the United Kingdom to increase transparency of data use. They typically contain information about the type of data being shared, the purpose, date of approval and name of organisation or individual using (or receiving) the data. However, information published lacks standardisation across organisations. Registers do not yet have a consistent approach and are often incomplete, updated infrequently and not accessible to the public. In this paper, we present an empirical analysis of existing data use registers in the UK and investigate accessibility, content, format and frequency of updates across health data organisations. This analysis will inform future recommendations for a data use register standard that will be published by the UK Health Data Research Alliance.

scholarly journals The Professional Standards Authority: overseeing the health and social care regulators

2018 ◽  
Vol 2 (2) ◽  
Author(s):  
Daniel Beech
Keyword(s):  
Social Care ◽  
Professional Standards ◽  
High Court ◽  
The Public ◽  
Health And Social Care ◽  
The Uk ◽  
Nurses And Midwives

The Professional Standards Authority (PSA) reviews the fitness-to-practise decisions of all nine health and social care regulators in the UK. In 2016–17, the authority reviewed 4,285 determinations. If the PSA deems a particular decision to be ‘insufficient for the protection of the public’ (previously the test was ‘unduly lenient’), that decision can be referred to the High Court, where it can be reviewed and, if appropriate, overturned. To help illustrate this aspect of the work of the PSA, this report presents the case of a midwife whose fitness to practise had been considered by the Nursing and Midwifery Council (NMC), the statutory regulator of nurses and midwives. The PSA considered that the outcome had been unduly lenient (i.e. it was considered under the earlier test), and the High Court agreed. The matter was remitted back to a differently constituted committee of the NMC, where it was decided that the appropriate outcome was that her name should be removed from the register, thereby effectively ending the career of the midwife.

scholarly journals New Horizons in the use of routine data for ageing research

2020 ◽  
Vol 49 (5) ◽  
pp. 716-722 ◽  
Author(s):  
Oliver M Todd ◽  
Jennifer K Burton ◽  
Richard M Dodds ◽  
Joe Hollinghurst ◽  
Ronan A Lyons ◽  
...  
Keyword(s):  
Older People ◽  
Social Care ◽  
Routine Data ◽  
Steady Increase ◽  
Health Issues ◽  
Data Infrastructure ◽  
New Horizons ◽  
Ageing Research ◽  
Processing Power ◽  
Health And Social Care

Abstract The past three decades have seen a steady increase in the availability of routinely collected health and social care data and the processing power to analyse it. These developments represent a major opportunity for ageing research, especially with the integration of different datasets across traditional boundaries of health and social care, for prognostic research and novel evaluations of interventions with representative populations of older people. However, there are considerable challenges in using routine data at the level of coding, data analysis and in the application of findings to everyday care. New Horizons in applying routine data to investigate novel questions in ageing research require a collaborative approach between clinicians, data scientists, biostatisticians, epidemiologists and trial methodologists. This requires building capacity for the next generation of research leaders in this important area. There is a need to develop consensus code lists and standardised, validated algorithms for common conditions and outcomes that are relevant for older people to maximise the potential of routine data research in this group. Lastly, we must help drive the application of routine data to improve the care of older people, through the development of novel methods for evaluation of interventions using routine data infrastructure. We believe that harnessing routine data can help address knowledge gaps for older people living with multiple conditions and frailty, and design interventions and pathways of care to address the complex health issues we face in caring for older people.

Frailty – from bedside to buzzword?

2015 ◽  
Vol 23 (3) ◽  
pp. 120-128 ◽  
Author(s):  
Jill Manthorpe ◽  
Steve Iliffe
Keyword(s):  
Policy Development ◽  
English Language ◽  
Social Care ◽  
Content Type ◽  
The Public ◽  
The Social ◽  
Health And Social Care ◽  
The Subject ◽  
To Come ◽  
Recent Policy

Purpose – The purpose of this paper is to explore common usage and understanding of the term “frailty”, which is increasingly used in health care debates in England. Design/methodology/approach – This is a commentary from the perspectives of health and social care researchers. Recent policy and research are drawn upon in the arguments presented. Findings – Most research on the subject of frailty comes from clinical practice although a parallel sociological or gerontological critique of the social construction is emerging. The public is likely to come across the term frailty through the media’s adoption of the term. Different definitions of frailty mean that estimates of the numbers of “frail people” will vary. Research limitations/implications – The commentary draws on material in the English language and on policy, commentary, and research material. Practical implications – The commentary may prompt reflection in practice and policy development on the usage of the term frailty and promote efforts to ensure that its meaning is clear and that it is acceptable to those to whom it is applied. Originality/value – The paper contributes to debates about frailty by considering the implications of using the term across health and social care and in integrated settings and encounters. It draws on medical presentations of the term frailty and on critiques of it as a powerful discourse.

scholarly journals Peningkatan pengetahuan masyarakat tentang perlindungan anak dari aspek pendidikan, hukum, dan kesehatan di Desa Tambun Kecamatan Bandar Petalangan

2020 ◽  
Vol 2 ◽  
pp. 359-365
Author(s):  
Ulfia Hasanah ◽  
Hayatul Ismi ◽  
Ihda Hasbiyati ◽  
Maimunah Maimunah ◽  
Rismadefi Woferst ◽  
...  
Keyword(s):  
Child Protection ◽  
Local Community ◽  
Public Understanding ◽  
Education Law ◽  
The Public ◽  
The People ◽  
Standard Population ◽  
Service Activity ◽  
Role Of Parents

There are several problems in the community with children in the fields of Education, Law and Health. There are still children under 18 years of age who are exploited as commercial sexual workers; children in conflict with the law, children aged 10-18 Years work in the informal sector, children who leave primary school before graduating or do not continue to the next level due to access and economy; adoption cases are carried out outside the standard population administration procedures; the discovery of stunted children. So, it is necessary to increase public understanding regarding child protection. One of those who have the responsibility of providing protection to children is the parent, the service program is carried out by providing material related to the role of parents and society in providing protection to children. The delivery of this material aims to provide an understanding of child protection in terms of education, law and health so that the public can understand the importance of protecting children. This service activity in Tambun Village can be said to be successful. There was a request from the participants to continue this activity. The people of Tambun Village hope that for further activities, further training is given regarding the skills needed by parents and the community. To increase community understanding, the WA Group was also created, whose members are parents who have participated in the Socialization program, this group aims to be a forum for communication between the Service Team and the local community.

scholarly journals A design-led framework for engaged research: Using a design approach to understand and place the public at the core of health and social care

2021 ◽  
Vol 69 (3) ◽  
pp. 1-18
Author(s):  
Mary Galvin ◽  
Avril Kennan ◽  
Éidín Ní Shé
Keyword(s):  
Health Research ◽  
Social Care ◽  
Social Research ◽  
Research Process ◽  
The Public ◽  
Umbrella Organisation ◽  
Health And Social Care ◽  
Academic Partner ◽  
New Policies

Abstract This paper offers a multi-perspective approach on the role of engaged research in health and social care. Each of the authors focuses on their individual experiences of this domain, from the perspective of an academic partner of the Health Research Board’s PPI Ignite programme, a CEO of an umbrella organisation for health research charities and a researcher in design innovation, focusing on health research. The paper outlines the values which underpin public and patient involvement, as well as examples of its application as engaged research. It details how organisations like Health Research Charities Ireland support and enable engaged research within health and social research and policy. This paper offers a framework for facilitating dialogue and response across all stakeholders in the engaged research process, illustrating the importance of engaged research and how we can further our understanding and application of it within health and social care policy by adopting a design-led approach. We argue that a design-led approach can both facilitate engaged research as well as support policymakers in the design of new policies and practices.

scholarly journals “Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland

2019 ◽  
Vol 3 ◽  
pp. 6 ◽  
Author(s):  
Jessica Stockdale ◽  
Jackie Cassell ◽  
Elizabeth Ford
Keyword(s):  
Common Good ◽  
Public Attitudes ◽  
Good Practice ◽  
Patient Data ◽  
Service Planning ◽  
Biomedical Ethics ◽  
Public Understanding ◽  
Framework Analysis ◽  
The Public ◽  
Public Views

Background: Use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical and privacy debates.Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis.Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data.Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data

scholarly journals Where has vulnerability gone?

2020 ◽  
pp. 147332502097331
Author(s):  
Catherine R Phillips
Keyword(s):  
Social Work ◽  
Health Care Workers ◽  
Social Care ◽  
Judith Butler ◽  
Cultural Representation ◽  
The Public ◽  
Care Workers ◽  
Health And Social Care ◽  
Cultural Spaces ◽  
Cultural Responses

During Covid-19, health care workers have been vulnerable to death, and at the same time, in response to their vulnerability, heroic. Heroism is one of the most ubiquitous narratives during this pandemic. In this article, I am interested in the juncture between vulnerability and heroism, the discursive privileging of a hero and the implications of this for social workers in health and social care. I use the writings of Judith Butler to ask, where has vulnerability gone? I argue that it is not that vulnerability is erased or suppressed, or comes second in the public imaginary, but rather, vulnerability is reconstituted as heroic and becomes unrecognisable. Vulnerability is an under-examined concept in social work and an analysis of its cultural representation during the outbreak of Covid-19, can contribute to our knowledge about how vulnerability operates in health and social care, as well as how vulnerability conditions the cultural spaces we operate within. Can new insights, provoked by the cultural responses to this pandemic, lead to a reorientation for social work politics and the politics of vulnerability?

Sign in / Sign up

Export Citation Format

Share Document