Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Lounsbury O

PROVIDER: S-EPMC7939935 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Lounsbury Olivia O Roberts Lily L Goodman Jonathan R JR Batey Philippa P Naar Lenny L Flott Kelsey M KM Lawrence-Jones Anna A Ghafur Saira S Darzi Ara A Neves Ana Luisa AL

Journal of medical Internet research 20210222 2

<h4>Background</h4>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 hav ...[more]

PMID: 33616532

Similar Datasets

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:BackgroundAcute stroke care demands fast procedures performed through the collaboration of multiple professionals across multiple organizations. Cloud computing and the wide adoption of electronic medical records (EMRs) enable health care systems to improve data availability and facilitate sharing among professionals. However, designing a secure and privacy-preserving EMR cloud-based application is challenging because it must dynamically control the access to the patient's EMR according to the needs for data during treatment.ObjectiveWe developed a prototype of a secure EMR cloud-based application. The application explores the security features offered by the eHealth cloud-based framework created by the Advanced Secure Cloud Encrypted Platform for Internationally Orchestrated Solutions in Health Care Horizon 2020 project. This study aimed to collect impressions, challenges, and improvements for the prototype when applied to the use case of secure data sharing among acute care teams during emergency treatment in the Netherlands.MethodsWe conducted 14 semistructured interviews with medical professionals with 4 prominent roles in acute care: emergency call centers, ambulance services, emergency hospitals, and general practitioner clinics. We used in-depth interviews to capture their perspectives about the application's design and functions and its use in a simulated acute care event. We used thematic analysis of interview transcripts. Participants were recruited until the collected data reached thematic saturation.ResultsThe participants' perceptions and feedback are presented as 5 themes identified from the interviews: current challenges (theme 1), quality of the shared EMR data (theme 2), integrity and auditability of the EMR data (theme 3), usefulness and functionality of the application (theme 4), and trust and acceptance of the technology (theme 5). The results reinforced the current challenges in patient data sharing during acute stroke care. Moreover, from the user point of view, we expressed the challenges of adopting the Advanced Secure Cloud Encrypted Platform for Internationally Orchestrated Solutions in Health Care Acute Stroke Care application in a real scenario and provided suggestions for improving the proposed technology's acceptability.ConclusionsThis study has endorsed a system that supports data sharing among acute care professionals with efficiency, but without compromising the security and privacy of the patient. This explorative study identified several significant barriers to and improvement opportunities for the future acceptance and adoption of the proposed system. Moreover, the study results highlight that the desired digital transformation should consider integrating the already existing systems instead of requesting migration to a new centralized system.

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

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

Background

Objective

Methods

Results

Conclusions

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets