Dataset Information

Patient data-sharing for immigration enforcement: a qualitative study of healthcare providers in England.

ABSTRACT: AIM:To explore healthcare providers' perceptions and experiences of the implications of a patient data-sharing agreement between National Health Service (NHS) Digital and the Home Office on access to NHS services and quality of care received by migrant patients in England. DESIGN:A qualitative study using semi-structured interviews, thematic analysis and constant-comparison approach. PARTICIPANTS:Eleven healthcare providers and one non-clinical volunteer working in community or hospital-based settings who had experience of migrants accessing NHS England services. Interviews were carried out in 2018. SETTING:England. RESULTS:Awareness and understanding of the patient data-sharing agreement varied among participants, who associated this with a perceived lack of transparency by the government. Participants provided insight into how they thought the data-sharing agreement was negatively influencing migrants' health-seeking behaviour, their relationship with clinicians and the safety and quality of their care. They referred to the policy as a challenge to their core ethical principles, explicitly patient confidentiality and trust, which varied depending on their clinical specialty. CONCLUSIONS:A perceived lack of transparency during the policy development process can result in suspicion or mistrust towards government among the health workforce, patients and public, which is underpinned by a notion of power or control. The patient data-sharing agreement was considered a threat to some of the core principles of the NHS and its implementation as adversely affecting healthcare access and patient safety. Future policy development should involve a range of stakeholders including civil society, healthcare professionals and ethicists, and include more meaningful assessments of the impact on healthcare and public health.

SUBMITTER: Papageorgiou V

PROVIDER: S-EPMC7044876 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Patient data-sharing for immigration enforcement: a qualitative study of healthcare providers in England.

Papageorgiou Vasiliki V Wharton-Smith Alexandra A Campos-Matos Ines I Ward Helen H

BMJ open 20200212 2

<h4>Aim</h4>To explore healthcare providers' perceptions and experiences of the implications of a patient data-sharing agreement between National Health Service (NHS) Digital and the Home Office on access to NHS services and quality of care received by migrant patients in England.<h4>Design</h4>A qualitative study using semi-structured interviews, thematic analysis and constant-comparison approach.<h4>Participants</h4>Eleven healthcare providers and one non-clinical volunteer working in communit ...[more]

PMID: 32051313

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Project description:BACKGROUND:Different models for care pathways involving both specialist and primary care have been developed to ensure adequate follow-up after discharge. These care pathways have mainly been developed and run by specialist care and have been disease-based. In this study, primary care providers took the initiative to develop a model for integrated care pathways across care levels for older patients in need of home care services after discharge. Initially, the objective was to develop pathways for patients diagnosed with heart failure, COPD and stroke. The aim of this paper is to investigate the process and the experiences of the participants in this developmental work. The participants were drawn from three hospitals, six municipalities and patient organizations in Central Norway. METHODS:This qualitative study used focus group interviews, written material and observations. Representatives from the hospitals, municipalities and patient organizations taking part in the development process were chosen as informants. RESULTS:The development process was very challenging because of the differing perspectives on care and different organizational structures in specialist care and primary care. In this study, the disease perspective, being dominant in specialist care, was not found to be suitable for use in primary health care because of the need to cover a broader perspective including the patient's functioning, social situation and his or her preferences. Furthermore, managing several different disease-based care pathways was found to be unsuitable in home care services, as well as unsuitable for a population characterized by a substantial degree of comorbidity. The outcome of the development process was a consensus that outlined a single, common patient-centred care pathway for transition from hospital to follow-up in primary care. The pathway was suitable for most common diseases and included functional and social aspects as well as disease follow-up, thus merging the differing perspectives. The disease-based care pathways were kept for use within the hospitals. CONCLUSIONS:Disease-based care pathways for older patients were found to be neither feasible nor sustainable in primary care. A common patient-centred care pathway that could meet the needs of multi- morbid patients was recommended.

Project description:There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient's rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and policy makers.We used a qualitative design to examine Swiss healthcare stakeholders' experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants (11 physicians, 7 policy-makers, 4 ethical committee members) between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory.All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries' patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients' rights and citizens' involvement on the other.The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data.

Project description:IntroductionPatient complexity is an increasingly used concept in clinical practice, policy debates and medical research. Yet the literature lacks a clear definition of its meaning and drivers from the health provider's perspective. This shortcoming is problematic for clinical practice and medical education in the light of a rising number of multimorbid patients and the need for future healthcare providers that are adequately trained in treating complex patients.ObjectivesTo develop an empirically grounded framework of healthcare providers' perceptions of patient complexity and to characterise the relationship between case complexity, care complexity and provider experience as complexity-contributing factors.DesignQualitative study based on semistructured in-depth interviews with healthcare practitioners.SettingA Swiss hospital-based HIV outpatient clinic.ParticipantsA total of 31 healthcare providers participated. Participants volunteered to take part and comprised 17 nurses, 8 junior physicians (interns) and 6 senior physicians (residents, fellows and attendings).ResultsPerceived patient complexity arises from the combination of case complexity drivers, the provider's perceived controllability, and a set of complexity moderators at the levels of the patient, the care provider and the broader care context. We develop a conceptual framework that outlines key relationships among these complexity-contributing factors and present 10 key questions to help guide medical professionals in making complexity more explicit and more manageable in daily practice.ConclusionsThe framework presented in this study helps to advance a shared understanding of patient complexity. Our findings inform curriculum design and the teaching of essential skills to medical students in areas characterised by high patient complexity such as general internal medicine and geriatrics. From a policy perspective, our findings have important implications for the design of more effective healthcare interventions for complex patients.

Project description:BackgroundData sharing is commonly seen as beneficial for science but is not yet common practice. Research funding agencies are known to play a key role in promoting data sharing, but German funders' data sharing policies appear to lag behind in international comparison. This study aims to answer the question of how German data sharing experts inside and outside funding agencies perceive and evaluate German funders' data sharing policies and overall efforts to promote data sharing.MethodsThis study is based on sixteen guided expert interviews with representatives of German funders and German research data experts from stakeholder organisations, who shared their perceptions of German' funders efforts to promote data sharing. By applying the method of qualitative content analysis to our interview data, we categorise and describe noteworthy aspects of the German data sharing policy landscape and illustrate our findings with interview passages.ResultsWe present our findings in five sections to distinguish our interviewees' perceptions on a) the status quo of German funders' data sharing policies, b) the role of funders in promoting data sharing, c) current and potential measures by funders to promote data sharing, d) general barriers to those measures, and e) the implementation of more binding data sharing requirements.Discussion and conclusionAlthough funders are perceived to be important promoters and facilitators of data sharing throughout our interviews, only few German funding agencies have data sharing policies in place. Several interviewees stated that funders could do more, for example by providing incentives for data sharing or by introducing more concrete policies. Our interviews suggest the academic freedom of grantees is widely perceived as an obstacle for German funders in introducing mandatory data sharing requirements. However, some interviewees stated that stricter data sharing requirements could be justified if data sharing is a part of good scientific practice.

Project description:BackgroundDue to more elderly and patients with complex illnesses, there is an increasing pressure on the healthcare system. General practice especially feels this pressure as being the first point of contact for the patients. Developments in digitalization have undergone fast progress and data-driven artificial intelligence (AI) has shown great potential for use in general practice. To develop AI as a support tool for general practitioners (GPs), access to patients' health data is needed, but patients have concerns regarding data sharing. Furthermore, studies show that trust is important regarding the patient-GP relationship, data sharing, and AI. The aim of this paper is to uncover patient perspectives on trust regarding the patient-GP relationship, data sharing and AI in general practice.MethodThis study investigated 10 patients' perspectives through qualitative interviews and written vignettes were chosen to elicit the patients (interviewees) perspectives on topics that they were not familiar with prior to the interviews. The study specifically investigated perspectives on 1) The patient-GP relationship, 2) data sharing regarding developing AI for general practice, and 3) implementation and use of AI in general practice using thematic analysis. The study took place in the North Denmark Region and the interviewees included had to be registered in general practice and be above 18 years in age. We included four men between 25 to 74 years in age and six women between 27 to 46 years in age.ResultsThe interviewees expressed a high level of trust towards their GP and were willing to share their health data with their GP. The interviewees believed that AI could be a great help to GPs if used as a support tool in general practice. However, it was important for the interviewees that the GP would still be the primary decision maker.ConclusionPatients may be willing to share health data to help implement and use AI in general practice. If AI is implemented in a way that preserves the patient-GP relationship and used as a support tool for the GP, our results indicate that patients may be positive towards the use of AI in general practice.

Project description:BACKGROUND:Insurance organizations are essential stakeholders in health care ecosystems. For addressing future health care needs, insurance companies require access to health data to deliver preventative and proactive digital health services to customers. However, extant research is limited in examining the conditions that incentivize health data sharing. OBJECTIVE:This study aimed to (1) identify the expectations of insurance customers when sharing health data, (2) determine the perceived intrinsic value of health data, and (3) explore the conditions that aid in incentivizing health data sharing in the relationship between an insurance organization and its customer. METHODS:A Web-based survey was distributed to randomly selected customers from a Finnish insurance organization through email. A single open-text answer was used for a qualitative data analysis through inductive coding, followed by a thematic analysis. Furthermore, the 4 constructs of commitment, power, reciprocity, and trust from the social exchange theory (SET) were applied as a framework. RESULTS:From the 5000 customers invited to participate, we received 452 surveys (response rate: 9.0%). Customer characteristics were found to reflect customer demographics. Of the 452 surveys, 48 (10.6%) open-text responses were skipped by the customer, 57 (12.6%) customers had no expectations from sharing health data, and 44 (9.7%) customers preferred to abstain from a data sharing relationship. Using the SET framework, we found that customers expected different conditions to be fulfilled by their insurance provider based on the commitment, power, reciprocity, and trust constructs. Of the 452 customers who completed the surveys, 64 (14.2%) customers required that the insurance organization meets their data treatment expectations (commitment). Overall, 4.9% (22/452) of customers were concerned about their health data being used against them to profile their health, to increase insurance prices, or to deny health insurance claims (power). A total of 28.5% (129/452) of customers expected some form of benefit, such as personalized digital health services, and 29.9% (135/452) of customers expected finance-related compensation (reciprocity). Furthermore, 7.5% (34/452) of customers expected some form of empathy from the insurance organization through enhanced transparency or an emotional connection (trust). CONCLUSIONS:To aid in the design and development of digital health services, insurance organizations need to address the customers' expectations when sharing their health data. We established the expectations of customers in the social exchange of health data and explored the perceived values of data as intangible goods. Actions by the insurance organization should aim to increase trust through a culture of transparency, commitment to treat health data in a prescribed manner, provide reciprocal benefits through digital health services that customers deem valuable, and assuage fears of health data being used to prevent providing insurance coverage or increase costs.

Dataset Information

Patient data-sharing for immigration enforcement: a qualitative study of healthcare providers in England.

Publications

Patient data-sharing for immigration enforcement: a qualitative study of healthcare providers in England.

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