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Insurance Customers' Expectations for Sharing Health Data: Qualitative Survey Study.

ABSTRACT: 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.

SUBMITTER: Grundstrom C

PROVIDER: S-EPMC7146247 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Insurance Customers' Expectations for Sharing Health Data: Qualitative Survey Study.

Grundstrom Casandra C Korhonen Olli O Väyrynen Karin K Isomursu Minna M

JMIR medical informatics 20200326 3

<h4>Background</h4>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.<h4>Objective</h4>This study aimed to (1) identify the expectations of insurance customers when sharing health data, (2) determine the ...[more]

PMID: 32213467

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Project description:BackgroundAlthough the use of patient-generated data (PGD) in the optimization of patient care shows great promise, little is known about whether patients who track their PGD necessarily share the data with their clinicians. Meanwhile, health literacy-an important construct that captures an individual's ability to manage their health and to engage with their health care providers-has often been neglected in prior studies focused on PGD tracking and sharing. To leverage the full potential of PGD, it is necessary to bridge the gap between patients' data tracking and data sharing practices by first understanding the interrelationships between these practices and the factors contributing to these practices.ObjectiveThis study aims to systematically examine the interrelationships between PGD tracking practices, data sharing practices, and health literacy among individual patients.MethodsWe surveyed 109 patients at the time they met with a clinician at a university health center, unlike prior research that often examined patients' retrospective experience after some time had passed since their clinic visit. The survey consisted of 39 questions asking patients about their PGD tracking and sharing practices based on their current clinical encounter. The survey also contained questions related to the participants' health literacy. All the participants completed the survey on a tablet device. The onsite survey study enabled us to collect ecologically valid data based on patients' immediate experiences situated within their clinic visit.ResultsWe found no evidence that tracking PGD was related to self-reports of having sufficient information to manage one's health; however, the number of data types participants tracked positively related to their self-assessed ability to actively engage with health care providers. Participants' data tracking practices and their health literacy did not relate to their data sharing practices; however, their ability to engage with health care providers positively related to their willingness to share their data with clinicians in the future. Participants reported several benefits of, and barriers to, sharing their PGD with clinicians.ConclusionsAlthough tracking PGD could help patients better engage with health care providers, it may not provide patients with sufficient information to manage their health. The gaps between tracking and sharing PGD with health care providers call for efforts to inform patients of how their data relate to their health and to facilitate efficient clinician-patient communication. To realize the full potential of PGD and to promote individuals' health literacy, empowering patients to effectively track and share their PGD is important-both technologies and health care providers can play important roles.

Project description:BackgroundSharing patient data can help drive scientific advances and improve patient care, but service users are concerned about how their data are used. When the National Health Service proposes to scrape general practitioner records, it is very important that we understand these concerns in some depth.ObjectiveThis study aims to investigate views of mental health service users on acceptable data sharing to provide clear recommendations for future data sharing systems.MethodsA total of 4 focus groups with 4 member-checking groups were conducted via the internet between October 2020 and March 2021, with a total of 22 service users in the United Kingdom. Thematic analysis was used to identify the themes.ResultsSix main themes, with several subthemes were identified, such as the purpose of data sharing-for profit, public good, and continuation of care; discrimination through the misattribution of physical symptoms to mental health conditions (ie, diagnostic overshadowing) alongside the discrimination of individuals or groups within society (ie, institutional discrimination); safeguarding data by preserving anonymity and confidentiality, strengthening security measures, and holding organizations accountable; data accuracy and informed consent-increasing transparency about data use and choice; and incorporating service user involvement in system governance to provide insight and increase security.ConclusionsThis study extends the limited research on the views and concerns of mental health service users regarding acceptable data sharing. If adopted, the recommendations should improve the confidence of service users in sharing their data. The five recommendations include screening to ensure that data sharing benefits the public, providing service users with information about how their data are shared and what for, highlighting the existing safeguarding procedures, incorporating service user involvement, and developing tailored training for health care professionals to address issues of diagnostic overshadowing and inaccurate health records. Adopting such systems would aid in data sharing for legitimate interests that will benefit patients and the National Health Service.

Project description:BackgroundA growing number of studies show the potential of loyalty card data for use in health research. However, research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was also examined.MethodsParticipants (N = 40) were recruited via Prolific Academic to take part in semi-structured telephone interviews, with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards.ResultsParticipant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants' decision to donate, although did affect their understanding of how loyalty card data could be used.ConclusionsBased on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made.

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:BACKGROUND:There has been considerable investment and strategic planning to introduce genomic testing into Australia's public health system. As more patients' genomic data is being held by the public health system, there will be increased requests from researchers to access this data. It is important that public policy reflects public expectations for how genomic data that is generated from clinical tests is used. To inform public policy and discussions around genomic data sharing, we sought public opinions on using genomic data contained in medical records for research purposes in the Australian state of Queensland. METHODS:A total of 1494 participants completed an online questionnaire between February and May 2019. Participants were adults living in Australia. The questionnaire explored participant preferences for sharing genomic data or biological samples with researchers, and concerns about genomic data sharing. RESULTS:Most participants wanted to be given the choice to have their genomic data from medical records used in research. Their expectations on whether and how often they needed to be approached for permission on using their genomic data, depended on whether the data was identifiable or anonymous. Their willingness to sharing data for research purposes depended on the type of information being shared, what type of research would be undertaken and who would be doing the research. Participants were most concerned with genomics data sharing that could lead to discrimination (insurance and employment), data being used for marketing, data security, or commercial use. CONCLUSIONS:Most participants were willing to share their genomic data from medical records with researchers, as long as permission for use was sought. However, the existing policies related to this process in Queensland do not reflect participant expectations for how this is achieved, particularly with anonymous genomics data. This inconsistency may be addressed by process changes, such as inclusion of research in addition to clinical consent or general research data consent programs.

Project description:BackgroundThe use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices.ObjectiveThis study aims to explore public attitudes in Australia toward sharing government health data with the private sector.MethodsA web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019.ResultsThe survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants' views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people's health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government's capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population.ConclusionsThis nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.

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Project description:BackgroundHealth insurance enrollment is a difficult financial decision with large health impacts. Challenges such as low health insurance literacy and lack of knowledge about choosing a plan further complicate this decision-making process. Therefore, to support consumers in their choice of a health insurance plan, it is essential to understand how individuals go about making this decision.ObjectiveThis study aims to understand the sources of information used by individuals to support their employer-provided health insurance enrollment decisions. It seeks to describe how individual descriptive factors lead to choosing a particular type of information source.MethodsAn introduction was presented on health insurance plan selection and the sources of information used to support these decisions from the 1980s to the present. Subsequently, an electronic survey of 151 full-time faculty and staff members was conducted. The survey consisted of four sections: demographics, sources of information, health insurance literacy, and technology acceptance. Descriptive statistics were used to show the demographic characteristics of the 126 eligible respondents and to study the response behaviors in the remaining survey sections. Proportion data analysis was performed using the Cochran-Armitage trend test to understand the strength of the association between our variables and the types of sources used by the respondents.ResultsIn terms of demographics, most of the respondents were women (103/126, 81.7%), represented a small household (1-2 persons; 87/126, 69%), and used their insurance 3-12 times a year (52/126, 41.3%). They assessed themselves as having moderate to high health insurance literacy and high acceptance of technology. The most selected and top-ranked sources were Official employer or state websites and Official Human Resources Virtual Benefits Counselor Alex. From our data analysis, we found that the use of official primary sources was constant across age groups and health insurance use groups. Meanwhile, the use of friends or family as a primary source slightly decreased as age and use increased.ConclusionsIn this exploratory study, we identified the main sources of health insurance information among full-time employees from a large state university and found that most of the respondents needed 2-3 sources to gather all the information that they desired. We also studied and identified the relationships between individual factors (such as age, gender, and literacy) and 2 dependent variables on the types of primary sources of information. We encountered several limitations, which will be addressed in future studies.

Dataset Information

Insurance Customers' Expectations for Sharing Health Data: Qualitative Survey Study.

Publications

Insurance Customers' Expectations for Sharing Health Data: Qualitative Survey Study.

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