Health Care Professionals’ Perspectives on the Secondary Use of Health Records to Improve Quality and Safety of Care in England: Qualitative Study

Background Health care professionals (HCPs) are often patients’ first point of contact in what concerns the communication of the purposes, benefits, and risks of sharing electronic health records (EHRs) for nondirect care purposes. Their engagement is fundamental to ensure patients’ buy-in and a successful implementation of health care data sharing schemes. However, their views on this subject are seldom evaluated. Objective This study aimed to explore HCPs’ perspectives on the secondary uses of health care data in England. Specifically, we aimed to assess their knowledge on its purposes and the main concerns about data sharing processes. Methods A total of 30 interviews were conducted between March 27, 2017, and April 7, 2017, using a Web-based interview platform and following a topic guide with open-ended questions. The participants represented a variety of geographic locations across England (London, West Midlands, East of England, North East England, and Yorkshire and the Humber), covering both primary and secondary care services. The transcripts were compiled verbatim and systematically reviewed by 2 independent reviewers using the framework analysis method to identify emerging themes. Results HCPs were knowledgeable about the possible secondary uses of data and highlighted its importance for patient profiling and tailored care, research, quality assurance, public health, and service delivery planning purposes. Main concerns toward data sharing included data accuracy, patients’ willingness to share their records, challenges on obtaining free and informed consent, data security, lack of adequacy or understanding of current policies, and potential patient exposure and exploitation. Conclusions These results suggest a high level of HCPs’ understanding about the purposes of data sharing for secondary purposes; however, some concerns still remain. A better understanding of HCPs’ knowledge and concerns could inform national communication policies and improve tailoring to maximize efficiency and improve patients’ buy-in.

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Health Care Professionals’ Perspectives on the Secondary Use of Health Records to Improve Quality and Safety of Care in England: Qualitative Study (Preprint)

10.2196/preprints.14135 ◽

2019 ◽

Author(s):

Ana Luísa Neves ◽

Dilkushi Poovendran ◽

Lisa Freise ◽

Saira Ghafur ◽

Kelsey Flott ◽

...

Keyword(s):

Health Care ◽

Data Sharing ◽

Health Care Professionals ◽

Research Quality ◽

Successful Implementation ◽

Framework Analysis ◽

Health Records ◽

Health Care Data ◽

North East ◽

High Level

BACKGROUND Health care professionals (HCPs) are often patients’ first point of contact in what concerns the communication of the purposes, benefits, and risks of sharing electronic health records (EHRs) for nondirect care purposes. Their engagement is fundamental to ensure patients’ buy-in and a successful implementation of health care data sharing schemes. However, their views on this subject are seldom evaluated. OBJECTIVE This study aimed to explore HCPs’ perspectives on the secondary uses of health care data in England. Specifically, we aimed to assess their knowledge on its purposes and the main concerns about data sharing processes. METHODS A total of 30 interviews were conducted between March 27, 2017, and April 7, 2017, using a Web-based interview platform and following a topic guide with open-ended questions. The participants represented a variety of geographic locations across England (London, West Midlands, East of England, North East England, and Yorkshire and the Humber), covering both primary and secondary care services. The transcripts were compiled verbatim and systematically reviewed by 2 independent reviewers using the framework analysis method to identify emerging themes. RESULTS HCPs were knowledgeable about the possible secondary uses of data and highlighted its importance for patient profiling and tailored care, research, quality assurance, public health, and service delivery planning purposes. Main concerns toward data sharing included data accuracy, patients’ willingness to share their records, challenges on obtaining free and informed consent, data security, lack of adequacy or understanding of current policies, and potential patient exposure and exploitation. CONCLUSIONS These results suggest a high level of HCPs’ understanding about the purposes of data sharing for secondary purposes; however, some concerns still remain. A better understanding of HCPs’ knowledge and concerns could inform national communication policies and improve tailoring to maximize efficiency and improve patients’ buy-in.

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Patient Perceptions on Data Sharing and Applying Artificial Intelligence to Health Care Data: Cross-sectional Survey (Preprint)

10.2196/preprints.26162 ◽

2020 ◽

Author(s):

Ravi Aggarwal ◽

Soma Farag ◽

Guy Martin ◽

Hutan Ashrafian ◽

Ara Darzi

Keyword(s):

Artificial Intelligence ◽

Health Care ◽

Data Sharing ◽

Health Data ◽

Patient Perceptions ◽

Successful Implementation ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Health Care Data ◽

Commercial Organizations

BACKGROUND Considerable research is being conducted as to how artificial intelligence (AI) can be effectively applied to health care. However, for the successful implementation of AI, large amounts of health data are required for training and testing algorithms. As such, there is a need to understand the perspectives and viewpoints of patients regarding the use of their health data in AI research. OBJECTIVE We surveyed a large sample of patients for identifying current awareness regarding health data research, and for obtaining their opinions and views on data sharing for AI research purposes, and on the use of AI technology on health care data. METHODS A cross-sectional survey with patients was conducted at a large multisite teaching hospital in the United Kingdom. Data were collected on patient and public views about sharing health data for research and the use of AI on health data. RESULTS A total of 408 participants completed the survey. The respondents had generally low levels of prior knowledge about AI. Most were comfortable with sharing health data with the National Health Service (NHS) (318/408, 77.9%) or universities (268/408, 65.7%), but far fewer with commercial organizations such as technology companies (108/408, 26.4%). The majority endorsed AI research on health care data (357/408, 87.4%) and health care imaging (353/408, 86.4%) in a university setting, provided that concerns about privacy, reidentification of anonymized health care data, and consent processes were addressed. CONCLUSIONS There were significant variations in the patient perceptions, levels of support, and understanding of health data research and AI. Greater public engagement levels and debates are necessary to ensure the acceptability of AI research and its successful integration into clinical practice in future.

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

Journal of Medical Internet Research ◽

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.

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A Roadmap to Inform Development, Validation and Approval of Digital Mobility Outcomes: The Mobilise-D Approach

Digital Biomarkers ◽

10.1159/000512513 ◽

2020 ◽

Vol 4 (1) ◽

pp. 13-27 ◽

Cited By ~ 1

Author(s):

Lynn Rochester ◽

Claudia Mazzà ◽

Arne Mueller ◽

Brian Caulfield ◽

Marie McCarthy ◽

...

Keyword(s):

Health Care ◽

Clinical Trials ◽

Health Care Professionals ◽

Digital Health ◽

Disease Status ◽

Proximal Femoral Fracture ◽

Chronic Obstructive ◽

Obstructive Pulmonary Disease ◽

Physical Mobility ◽

High Level

Health care has had to adapt rapidly to COVID-19, and this in turn has highlighted a pressing need for tools to facilitate remote visits and monitoring. Digital health technology, including body-worn devices, offers a solution using digital outcomes to measure and monitor disease status and provide outcomes meaningful to both patients and health care professionals. Remote monitoring of physical mobility is a prime example, because mobility is among the most advanced modalities that can be assessed digitally and remotely. Loss of mobility is also an important feature of many health conditions, providing a read-out of health as well as a target for intervention. Real-world, continuous digital measures of mobility (digital mobility outcomes or DMOs) provide an opportunity for novel insights into health care conditions complementing existing mobility measures. Accepted and approved DMOs are not yet widely available. The need for large collaborative efforts to tackle the critical steps to adoption is widely recognised. Mobilise-D is an example. It is a multidisciplinary consortium of 34 institutions from academia and industry funded through the European Innovative Medicines Initiative 2 Joint Undertaking. Members of Mobilise-D are collaborating to address the critical steps for DMOs to be adopted in clinical trials and ultimately health care. To achieve this, the consortium has developed a roadmap to inform the development, validation and approval of DMOs in Parkinson’s disease, multiple sclerosis, chronic obstructive pulmonary disease and recovery from proximal femoral fracture. Here we aim to describe the proposed approach and provide a high-level view of the ongoing and planned work of the Mobilise-D consortium. Ultimately, Mobilise-D aims to stimulate widespread adoption of DMOs through the provision of device agnostic software, standards and robust validation in order to bring digital outcomes from concept to use in clinical trials and health care.

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Knowledge, attitudes and behaviours towards vaccination: a survey of university students in Europe

European Journal of Public Health ◽

10.1093/eurpub/ckaa166.1404 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

A Callegaro ◽

L Chinenye Ilogu ◽

O Lugovska ◽

S Mazzilli ◽

A Prugnola ◽

...

Keyword(s):

Health Care ◽

Medical Students ◽

Health Care Professionals ◽

Online Survey ◽

Educational Interventions ◽

Cross Sectional ◽

High Level ◽

Coverage Rates ◽

The University ◽

Vaccination Knowledge

Abstract Background Immunisation programs are still facing substantial challenges in achieving target coverage rates. This has been attributed to the growing negative individual vaccination attitudes and behaviours. Most of the current studies assessing vaccination knowledge, attitude and beliefs targets adults. However, young people represent future parents and health care professionals. The objective of this study was to investigate vaccination knowledge attitudes and behaviours among university medical and non-medical students in Europe. Methods We performed a cross-sectional online survey between April and July 2018. The study participants were students attending different faculties at the University of Antwerp, Belgium and the University of Pisa, Italy. We described sample characteristics. The effect of risk factors was tested with univariate and multivariate logistic regressions. Results A total of 2079 participants completed the survey including 873 medical students and 1206 from other faculties. The average of vaccination knowledge, attitudes, and confidence was respectively 5.51 (SD: 1.41), 4.66 (SD: 0.14) and 5.28 (SD: 0.57) on the 6-points scale. Our respondents demonstrated a high level of awareness with respect to their vaccination history. In total, 67.7% (n = 1407) reported to have received at least one vaccine in the previous five years; only 6.0% (n = 35) did not receive any vaccine in the previous 10 years. According to logistic regression analysis Italian students had significantly higher knowledge, attitude and confidence scores than Belgium respondents. Students of medicine scored significantly higher compared to non-medical students. Conclusions In order to reduce the gaps in vaccinations knowledge between non-medical and medical students we should plan educational interventions. In this way the number of future sceptical parents could be decreased. Further studies are required to explain the differences between countries. Key messages Young adults are the parents and the health care professionals of the future, for this reason their vaccination knowledge attitudes and behaviours should be carefully monitored. European non-medical students have lower vaccinations knowledge, attitudes and confidence compared with medical student. In order to fill these gaps, we should plan educational interventions.

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Improving support for breastfeeding mothers: a qualitative study on the experiences of breastfeeding among mothers who reside in a deprived and culturally diverse community

International Journal for Equity in Health ◽

10.1186/s12939-021-01419-0 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Erica Jane Cook ◽

Faye Powell ◽

Nasreen Ali ◽

Catrin Penn-Jones ◽

Bertha Ochieng ◽

...

Keyword(s):

Health Care ◽

Focus Groups ◽

Health Care Professionals ◽

Culturally Diverse ◽

Local Community ◽

Framework Analysis ◽

Black African ◽

Early Stages ◽

Practical Support ◽

Diverse Community

Abstract Background The United Kingdom has one of the lowest breastfeeding rates in Europe, with the initiation and continuation of breastfeeding shown to be closely related to the mothers’ age, ethnicity and social class. Whilst the barriers that influence a woman’s decision to breastfeed are well documented, less is known how these barriers vary by the UK’s diverse population. As such, this study aimed to explore mothers’ experiences of breastfeeding and accessing breastfeeding services offered locally amongst a deprived and culturally diverse community. Methods A qualitative interpretive study comprising of 63 mothers (white British n = 8, Pakistani n = 13, Bangladeshi n = 10, black African n = 15 and Polish n = 17) who took part in single-sex focus groups, conducted in local community centres across the most deprived and ethnically diverse wards in Luton, UK. The focus groups were audio-recorded, transcribed and analysed thematically using Framework Analysis. Results The most common barriers to breastfeeding irrespective of ethnicity were perceptions surrounding pain and lack of milk. Confidence and motivation were found to be crucial facilitators of breastfeeding; whereby mothers felt that interventions should seek to reassure and support mothers not only during the early stages but throughout the breastfeeding journey. Mothers particularly valued the practical support provided by health care professions particularly surrounding positioning and attachment techniques. However, many mothers felt that the support from health care professionals was not always followed through. Conclusions The findings presented inform important recommendations for the design and implementation of future programs and interventions targeted at reducing breastfeeding inequalities. Interventions should focus on providing mothers practical support and reassurance not only during the early stages but throughout their breastfeeding journey. The findings also highlight the need for tailoring services to support diverse communities which acknowledge different traditional and familial practices.

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A Dutchman in London: reflections of a hospital chief executive from the Netherlands in the NHS

BMJ Leader ◽

10.1136/leader-2021-000509 ◽

2021 ◽

pp. leader-2021-000509

Author(s):

Marcel Levi

Keyword(s):

Health Care ◽

The Netherlands ◽

Health Care Professionals ◽

Chief Executive ◽

Point Of View ◽

British Society ◽

The Public ◽

Interesting Insight ◽

Clinical Point ◽

High Level

BackgroundThe NHS is a fascinating health care system and is enjoying a lot of support from all layers of British society. However, it is clear that the system has excellent features but also areas that can be improved.Story of selfA number of years as a chief executive in one of London’s largest hospital has brought me a wealth of impressions, experiences, and understanding about working in the NHS. Contrasting those to my previous experience as chief executive in Amsterdam (The Netherlands) provides an interesting insight.ObservationsVery strong features of the NHS are the high level of health care professionals, the focus on quality and safety, and involvement of patients and the public. However, the NHS can significantly improve by addressing the lack of clinical professionals in the lead, curtailing ever increasing bureaucracy, and reducing its peculiar preference for outsourcing even the most crucial activities to private parties. The frequent inability to swiftly and successfully complete goal-directed negotiations as well as the large but from a clinical point of view irrelevant private sector are areas of sustained bewilderment. Lastly, the drive for innovation and transformation as well as the level of biomedical research in the NHS and supported by the British universities is fascinating and outstanding.

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