scholarly journals “Opening a Can of Worms”: Public hopes and fears on healthcare data sharing. A qualitative study. (Preprint)

2020 ◽  
Author(s):  
Olivia Lounsbury ◽  
Lily Roberts ◽  
Jonathan R Goodman ◽  
Pip Batey ◽  
Lenny Naar ◽  
...  
Keyword(s):  
Data Sharing ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Local Level ◽  
Human Centered Design ◽  
Patient Centred Care ◽  
The Public ◽  
Healthcare Data ◽  
Qualitative Feedback ◽  
The Impact

BACKGROUND Evidence suggests that healthcare data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, in order to achieve efficient, meaningful adoption of healthcare data sharing initiatives, it is necessary to engage all stakeholders, from healthcare professionals to patients. Although previous work has assessed healthcare professionals’ perceptions of data sharing, the general public perspectives and particularly seldom heard groups, have yet to be fully assessed. OBJECTIVE This study aims to explore public views, particularly their hopes and concerns, around healthcare data sharing. METHODS An original, immersive public engagement interactive experience was developed - “The Can of Worms” installation - in which participants were prompted to reflect about data sharing through listening to individual stories around healthcare data sharing. A multidisciplinary team with expertise in research, public involvement and human-centered design developed the concept. The installation took place in three separate events, between Nov 2018 and Nov 2019. A combination of convenience and snowballing sampling was used. Participants were asked to fill self-administered feedback cards, and to describe their hopes and fears about the meaningful use of data in healthcare. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes. RESULTS Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement and human-centered design, to tell stories, collect perspectives, and spark conversation around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ ‘hopes’ and ‘fears’ for healthcare data sharing. Thematic analyses identified six themes under ‘hopes’: (1) enablement of personal access and ownership, (2) increased interoperability and collaboration, (3) generation of evidence for better and safer care, (4) improved timeliness and efficiency, (5) delivery of more personalised care, and (6) equality. The five main ‘fears’ identified included (1) inadequate security and exploitation, (2) data inaccuracy, (3) distrust , (4) discrimination and inequality, and (5) less patient-centred care. CONCLUSIONS This work sheds new light on the main hopes and fears from the public in what concerns healthcare data sharing. Importantly, our results highlight novel concerns from the public, in particular in what concerns the impact on health disparities, both at international and local level and on delivering patient-centred care. Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of healthcare data use. CLINICALTRIAL Not applicable

scholarly journals Opening a “Can of Worms” to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study

10.2196/22744 ◽  
2021 ◽  
Vol 23 (2) ◽  
pp. e22744
Author(s):  
Olivia Lounsbury ◽  
Lily Roberts ◽  
Jonathan R Goodman ◽  
Philippa Batey ◽  
Lenny Naar ◽  
...  
Keyword(s):  
Health Care ◽  
Data Sharing ◽  
Health Care Professionals ◽  
Public Involvement ◽  
Patient Centered Care ◽  
Patient Centered ◽  
Human Centered Design ◽  
The Public ◽  
Health Care Data ◽  
Centered Care

Background Evidence suggests that health care data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, to achieve efficient and meaningful adoption of health care data-sharing initiatives, it is necessary to engage all stakeholders, from health care professionals to patients. Although previous work has assessed health care professionals’ perceptions of data sharing, perspectives of the general public and particularly of seldom heard groups have yet to be fully assessed. Objective This study aims to explore the views of the public, particularly their hopes and concerns, around health care data sharing. Methods An original, immersive public engagement interactive experience was developed—The Can of Worms installation—in which participants were prompted to reflect about data sharing through listening to individual stories around health care data sharing. A multidisciplinary team with expertise in research, public involvement, and human-centered design developed this concept. The installation took place in three separate events between November 2018 and November 2019. A combination of convenience and snowball sampling was used in this study. Participants were asked to fill self-administered feedback cards and to describe their hopes and fears about the meaningful use of data in health care. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes. Results Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement, and human-centered design to tell stories, collect perspectives, and spark conversations around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ hopes and fears for health care data sharing. Thematic analyses identified six themes under hopes: enablement of personal access and ownership, increased interoperability and collaboration, generation of evidence for better and safer care, improved timeliness and efficiency, delivery of more personalized care, and equality. The five main fears identified included inadequate security and exploitation, data inaccuracy, distrust, discrimination and inequality, and less patient-centered care. Conclusions This study sheds new light on the main hopes and fears of the public regarding health care data sharing. Importantly, our results highlight novel concerns from the public, particularly in terms of the impact on health disparities, both at international and local levels, and on delivering patient-centered care. Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of health care data use.

How to improve diversity in patient and public involvement

2021 ◽  
pp. 1-8
Author(s):  
Rebecca Golenya ◽  
George D Chloros ◽  
Michalis Panteli ◽  
Peter V Giannoudis ◽  
Anthony Howard
Keyword(s):  
Lived Experiences ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Barriers To Participation ◽  
The Public ◽  
Common Barriers ◽  
Quality Of Research

Patient and public involvement involves ascertaining the opinions of and collaborating with patients and members of the public to holistically improve the quality of research. Patient and public involvement provides patients with a platform to use and share their lived experiences. This allows healthcare professionals to gain a deeper appreciation of the patient's perspective, which enables future research to be more patient centred and tailored to patients' requirements. Patient and public involvement aims to broadly encapsulate the opinions of the public, so ensuring diversity is recommended. This article provides a practical framework to increase diversity and engage hard-to-reach demographics in patient and public involvement. It highlights some common barriers to participation and methods for overcoming this, describes sampling frameworks and provides examples of how these have been adopted in practice.

scholarly journals Does implicit healthcare rationing impose an unfair legal burden on doctors? A study of Portuguese jurisprudence

2020 ◽  
Vol 20 (1) ◽  
pp. 31-57
Author(s):  
Eva Dias Costa ◽  
Micaela Pinho
Keyword(s):  
Healthcare Professionals ◽  
Ethical Dilemmas ◽  
Burden Of Proof ◽  
Qualitative Approach ◽  
Public Records ◽  
The Public ◽  
Heavy Burden ◽  
Healthcare Rationing ◽  
The Impact ◽  
Made In

Healthcare rationing is inevitable, never more so than during the COVID-19 pandemic. In Portugal, rationing is largely implicit and relies too much on bedside decisions, made in stressful circumstances, involving ethical dilemmas and being prone to error. This study uses a qualitative approach by exploring the public records of Portuguese courts for malpractice suits between the years of 2008 and 2019 to ascertain whether the damage suffered by patients in these cases could in any part be attributed to a lack of resources. During this research, we found that a large number of lawsuits against doctors and hospitals might have in fact been the unfortunate result of the constraints of implicit prioritization. We concluded that lawyers and judges must be made aware of the impact of implicit rationing decisions on healthcare professionals, who are judged against a professional standard and an inverse onus rule that places on them a heavy burden of proof.

Guidance on development and operation of Young Persons’ Advisory Groups

2020 ◽  
Vol 105 (9) ◽  
pp. 875-880
Author(s):  
Winnie Chan ◽  
Pravheen Thurairajah ◽  
Nancy Butcher ◽  
Cor Oosterwijk ◽  
Kim Wever ◽  
...  
Keyword(s):  
Clinical Research ◽  
Best Practice ◽  
Public Involvement ◽  
Web Based ◽  
The Public ◽  
Research Areas ◽  
Advisory Groups ◽  
Semistructured Interviews ◽  
Needs Assessment Survey ◽  
The Impact

BackgroundEngaging patients and the public as collaborators in research is increasingly recognised as important as such partnerships can help improve research relevance and acceptability. Young Persons’ Advisory Groups (YPAGs) provide a forum for clinical researchers and triallists to engage with children and young people on issues relevant to the design, conduct and translation of paediatric clinical trials. Until fairly recently, there was very little information available to guide the successful development and operation of YPAGs.ObjectiveTo develop an evidence-based tool to guide clinical researchers and triallists in the establishment and operation of a YPAG.MethodsAn online needs assessment survey was conducted using SurveyMonkey with 60 known paediatric drug researchers to identify knowledge gaps around YPAG engagement, development and operation. Semistructured interviews with founders and coordinators of five well-established existing YPAGs and a review of the literature were performed to identify best-practice processes for starting up and operating YPAG.ResultsThe majority of 12 survey respondents (20%) from 12 different centres indicated that while they felt YPAGs could benefit their research, guidance on how to develop and operate a YPAG was needed. Most preferred a web-based guidance tool. Ten core steps in starting up and operating a YPAG were identified and developed into an online YPAG guidance tool, now freely accessible for use by paediatric clinical researchers worldwide. Plans to evaluate the impact are in place.ConclusionsThis novel tool, developed with an internationally based group of public involvement leads working across paediatric clinical research areas, provides harmonised guidance for researchers seeking to develop and operate YPAGs to help improve the quality and impact of paediatric clinical research studies.

scholarly journals Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e047995
Author(s):  
Rosamund Yu ◽  
Bec Hanley ◽  
Simon Denegri ◽  
Jaber Ahmed ◽  
Nicholas J McNally
Keyword(s):  
Biomedical Research ◽  
Public Involvement ◽  
Good Practice ◽  
Training Programme ◽  
Patient And Public Involvement ◽  
Research Centre ◽  
Major Research ◽  
The Public ◽  
The Uk ◽  
The Impact

ObjectivesTo design, deliver and evaluate a programme of training workshops for biomedical researchers aimed at building confidence and skills in actively involving patients and the public (PPI) in research.DesignA bespoke programme of training workshops in PPI aimed at researchers.SettingA large National Institute for Health Research Biomedical Research Centre in London and several partner organisations.Participants721 scientists, clinicians and research managers attending dedicated training in PPI at a major London NHS (National Health Service)–university partnership.InterventionsA programme of 72 training workshops, designed to build practical skills and confidence for researchers working with patients and the public in research, was delivered at a major research-active NHS:university partnership. An iterative approach was taken to the programme, with the content of the workshops continually reviewed and refreshed to respond to the needs of researchers. Surveys before, immediately following and 6 months after training investigated the impact on researchers’ confidence and skills in PPI work, and the kind of PPI they subsequently carried out.ResultsTraining brought about immediate marked increases in researchers’ self-reported confidence to carry out PPI activities within their research, and in their knowledge of good practice. The evaluation indicates that workshop attendees were more likely to involve patients in their research following training. Researchers tended to involve patients and the public in a range of areas, including input to study design and patient information, in particular.ConclusionsWhen positioned within a broader organisational strategy for PPI in research, such training has an important role to play in progressing PPI in a major research partnership. Training appeared to provide the confidence needed to carry out PPI which enabled further development of confidence and skills. Involving researchers who have attended the training in the ongoing development of the programme and bringing in patients to the training programme are key next steps.

OP33 Adopting Health Technologies: NICE Approach For Evidence Into Action

2018 ◽  
Vol 34 (S1) ◽  
pp. 13-14
Author(s):  
Elaine Chesworth ◽  
Katie Wyart ◽  
Paul Chrisp
Keyword(s):  
Healthcare Professionals ◽  
Care Pathway ◽  
Local Level ◽  
Health Technology ◽  
Team Work ◽  
Patient Acceptance ◽  
Barriers To Adoption ◽  
Health Technologies ◽  
Cost Impact ◽  
The Impact

Introduction:Evidence and guidance alone do not change practice. A multitude of factors are influential upon whether a particular health technology is adopted in practice. The adoption team at the National Institute for Health and Care Excellence (NICE) engages with healthcare professionals to develop specifically tailored support for the adoption of NICE health technology assessments (NICE medical technologies, diagnostics and technology appraisal guidance).Methods:The NICE adoption team uses a structured process which involves engagement of healthcare professionals with experience or knowledge of the technology to identify the barriers to adoption. This information is used to populate the topic selection tool which presents the impact of adopting the technology under five headings: care pathway change; finance; difficulty to implement; education; and, patient acceptance. The result indicates which guidance would benefit from adoption support: plan and develop tailored solutions to address barriers to adoption which include a resource impact assessment and targeted communications; quality assure; and, publish tailored resources.Results:Examples of tailored outputs include: adoption resources sharing real world experiences of sites that have adopted the technology; and, NICE pilot projects, where the adoption team work closely with sites to support adoption of the technology at a local level. The team then share learning and results from the project to facilitate: engagement with national planning groups to coordinate wider scale adoption; resource impact assessments which help local cost impact of adoption to be estimated; engagement with general and specialist media; and, influencing national tariff.Conclusions:NICE's processes have evolved to facilitate the development of a wider variety of more tailored resources, to support adoption of NICE health technology assessments guidance into practice. We will continue to engage with healthcare professionals and be responsive in our processes to ensure the packages of adoption support are tailored to need.

scholarly journals The Contribution of a Charitable Organization to Regional Cleft Lip and Palate Services in England and Scotland

2019 ◽  
Vol 57 (1) ◽  
pp. 14-20
Author(s):  
Nicola Marie Stock ◽  
Ella Guest ◽  
Kate Stoneman ◽  
Matthew Ridley ◽  
Claire Evans ◽  
...  
Keyword(s):  
Online Survey ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Local Level ◽  
Support Network ◽  
Charitable Organizations ◽  
Charitable Organization ◽  
Qualitative Feedback ◽  
Regional Service ◽  
The Impact

Background: From diagnosis through to adulthood, a cleft lip and/or palate (CL/P) poses a number of challenges for those affected. Alongside the care provided by clinical teams, complementary information and support is offered by charitable organizations. In 2011, the Cleft Lip and Palate Association received funding to implement a new regional service across England and Scotland, with the aim of increasing support at a local level. The Centre for Appearance Research at the University of the West of England were commissioned to conduct an independent evaluation of the service over 7 years. Methods: A pragmatic, mixed-methods approach was utilized to assess the impact of the service from the perspective of charity volunteers; children, young people, and adults with CL/P; caregivers; and clinicians. Feedback forms were distributed to stakeholders at a variety of events, and qualitative feedback was collected via focus groups and an online survey. Results: The majority of participants indicated they had gained access to a local support network, felt more able to cope with CL/P-related challenges, and felt more confident in themselves. Qualitative investigation provided further support for these findings and highlighted additional benefits of the regional service for clinical teams. Conclusions: The evaluation provides encouraging evidence toward the contribution of a relatively small charitable organization in the context of cleft care. The importance of a pragmatic approach to community-based evaluation and the benefits of collaborative working between researchers and the charitable sector were also highlighted.

Public Participation in Environmental Impact Assessments Between Spain and Portugal

2015 ◽  
Vol 17 (02) ◽  
pp. 1550022 ◽  
Author(s):  
Fernando Vicente ◽  
Teresa Fidélis ◽  
Gonzalo Méndez
Keyword(s):  
Environmental Impact ◽  
Public Participation ◽  
Impact Assessment ◽  
Environmental Impact Assessment ◽  
Public Involvement ◽  
Considerable Increase ◽  
Significant Development ◽  
The Public ◽  
Environmental Impact Assessments ◽  
The Impact

Since 2000, the Transboundary Environmental Impact Assessment (TEIA) process in the Iberian context has undergone significant development due to new circumstances that came into play at the bilateral and European levels: (i) the adoption of a collaborative TEIA Protocol between Spain and Portugal in 2008; and (ii) the increasing number of cross-border projects supported by European Union funds. Despite these developments, the impact of this bilateral regulation on public participation, the cornerstone of any Environmental Impact Assessment (EIA), has not yet been fully examined. Drawing from specific literature focusing on the involvement of the public as the basis of effective improvement of the TEIA, this paper critically analyses if the lates transboundary provision has encouraged public participation in this context. Although the analysis of the TEIA enforcement revealed a considerable increase in the number of consultations between the neighbouring states compared to the previous situation, public involvement has not increased. Based on these findings, this paper presents a set of recommendations to more effectively involve the public in transboundary consultations.

Patient and Public Involvement in Clinical Practice Guidelines

2011 ◽  
Vol 31 (6) ◽  
pp. E45-E74 ◽  
Author(s):  
France Légaré ◽  
Antoine Boivin ◽  
Trudy van der Weijden ◽  
Christine Pakenham ◽  
Jako Burgers ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Literature Review ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Public Involvement ◽  
The United States ◽  
Patient And Public Involvement ◽  
Bibliographic Databases ◽  
The Public ◽  
The Impact

Background. The role of patient and public involvement programs (PPIPs) in developing and implementing clinical practice guidelines (CPGs) has generated great interest. Purpose. The authors sought to identify key components of PPIPs used in developing and implementing CPGs. Data sources. The authors searched bibliographic databases and contacted relevant organizations. Study selection. In total, 2161 articles and reports were retrieved on PPIPs in the development and implementation of CPGs. Of these, 71 qualified for inclusion in the review. Data extraction. Reviewers independently extracted data on key components of PPIPs and barriers and facilitators to their operation. Data synthesis. Over half of the studies were published after 2002, and more than half originated from the United States, the United Kingdom, Australia, and Germany. CPGs that involved patients and the public addressed a variety of health problems, especially mental health and cancer. The most frequently cited objective for using PPIPs in developing CPGs was to incorporate patients’ values or perspectives in CPG recommendations. Patients and their families and caregivers were the parties most often involved. Methods used to recruit PPIP participants included soliciting through patient/public organizations, sending invitations, and receiving referrals and recruits from clinicians. Patients and the public most often participated by taking part in a CPG working group, workshop, meeting, seminar, literature review, or consultation such as a focus group, individual interview, or survey. Patients and the public principally helped formulate recommendations and revise drafts. Limitations. The authors did not contact the authors of the studies. Conclusion. This literature review provides an extensive knowledge base for making PPIPs more effective when developing and implementing CPGs. More research is needed to assess the impact of PPIPs and resources they require.

The Legal and Political Framework for Archaeology and the Protection of Archaeological Resources in South Africa

2020 ◽  
Author(s):  
Janette Deacon
Keyword(s):  
South Africa ◽  
20Th Century ◽  
Local Level ◽  
Management Strategies ◽  
Political Conflict ◽  
Assessment Process ◽  
Successful Implementation ◽  
The Public ◽  
Southern Rhodesia ◽  
The Impact

It is no surprise that the legal framework that protects archaeological and other heritage resources in South Africa is firmly rooted in the country’s political history and latterly in internationally accepted guidelines. The British colonial system that was applied in many African colonies in the 20th century, for example Zimbabwe (Southern Rhodesia), Botswana (Bechuanaland), and Tanzania (Tanganyika), shaped the early legislation and, until the new millennium, was essentially reactive. Western-style government was firmly in charge, traditional managers were not consulted, and legal action could be taken (but seldom was) against those who ignored the protective measures and damaged the archaeological material or site. In South Africa, the National Heritage Resources Act (Act 25 of 1999), which was implemented by the new democratically elected government in 2000, six years after the fall of apartheid, broadened the range of definitions to identify mainly historical places of significance that had not been recorded before, such as sites of slavery and graves of victims of political conflict. Proactive measures were introduced to assess the impact of development on archaeological sites and their mitigation before development, and the assessment process guides management strategies to retain the significance. Some of these reforms were borrowed from legislation in former British colonies such as Australia, New Zealand, and Canada, and the framework was influenced by international guidelines such as the Burra Charter and the Operational Guidelines for the World Heritage Convention. The experience that has been gained since 2000, particularly through the involvement of the public at the local level, has highlighted issues for legislative review that will pay more attention to traditional management, skills development, monitoring, and local government responsibilities, than to policing. The aim is to enable the public to protect archaeological and other heritage resources because they are significant to them and not only because there is a law that prohibits their destruction without a permit. Successful implementation will continue to depend on the political value that these resources are perceived to have in a country where historical places of the 20th century generally have more heritage interest than archaeology.

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