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.

Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review

“…Conversely, patients appear less willing to share personal health data with government bodies [ 18 , 59 , 102 ], private insurance companies [ 16 , 32 , 34 , 36 , 44 , 54 , 67 , 72 , 77 , 84 , 92 , 95 , 100 ] (often linked to a fear of being denied coverage [ 67 , 72 , 101 ]), pharmaceutical companies [ 14 , 16 , 18 , 40 , 67 , 68 , 77 , 84 , 92 , 96 , 103 ], and commercial or private entities [ 16 , 32 , 36 , 40 , 44 , 47 , 51 , 59 , 60 , 67 , 69 , 70 , 97 , 100 , 102 , 104 - 108 ]. However, it is often not a straightforward delineation between data user type and public willingness to share.…”

“…Finally, the provision of meaningful incentives and compensation [ 10 , 51 , 72 , 86 , 93 , 105 , 121 , 148 , 149 ] “broadly defined to include financial compensation, expressions of appreciation...recognition and sharing of results” [ 51 ] also appears integral in fostering public support. Recent research conducted by Luo et al [ 14 ] identified the following types of compensation: free treatment, money, food, cryptocurrencies, discounts on health insurance, shared research findings, and donations to a good cause, with free treatment receiving the most mentions, followed by cryptocurrencies and money.…”

“…However, appropriate compensation (recognizing this looks different for different people) appeared particularly influential if the third party, particularly pharmaceutical companies were making money from participant data [ 14 ], with resulting profits expected to be returned to the public or patient [ 108 ]. Providing valued, reciprocal, and equitable benefits therefore appears influential in facilitating data sharing intentions [ 72 ].…”

Walk a mile in my shoes: perspectives towards sharing of health and experience data among individuals living with sickle cell disorder

“…A hesitation linked to sharing genomic and health record data is often linked to a fear of reprisals, namely data being used against individual patients or collective communities ( 38 - 43 ) including a reduction or rejection in medical insurance cover ( 35 , 40 , 44 - 48 ) and employment opportunities ( 40 , 46 , 49 - 50 ). Prior studies have shown that willingness to share health data among those with rare disorders comes with specific requirements in order to respect their privacy, choices and needs for information regarding the use of their data ( 7 ), with such conditions viewed as safeguards preventing data from being misused, surreptitiously extracted or used to serve agendas that benefit research and industry as opposed to patients ( 51 , 52 ).…”

Citizen engagement in healthcare procurement decision-making by healthcare insurers: recent experiences in the Netherlands

“…However, healthcare insurers seem to maximize the use of data and analytics-driven approaches with available data to steer the development of new policies and products, particularly at the regional level. Fostering a culture of transparency and reciprocal benefits to sharing data are needed to align actors towards better addressing the needs and expectations of the insured [ 28 ].…”