Expert Advises Caution Regarding Consumer-generated Data In Healthcare

Dr. Eldesia Granger of The MITRE Corporation is guiding healthcare leaders on how to work with consumer-generated data. At HIMSS20, she will be highlighting MITRE’s framework for handling this emerging information source.

Consumer-generated data is being used increasingly to not only document the medical history of patient, but also to forecast health outcomes, risks and healthcare utilization. In the absence of ethical standards to guide consumer-generated data use in healthcare analytics, the patient privacy and autonomy are at risk. Violation of privacy can cause the disruption of trust in the patient-provider relationship, or marginalization of individuals or populations.

Healthcare organizations and their vendors increasingly use consumer and lifestyle data which is referred to as consumer-generated data. This includes data such as an individual’s purchase transactions, internet searches, social media presence, wearables data, etc.

If you are thinking that organizations use your consumer-generated data for marketing purposes only, you are wrong. Organizations are now using consumer-generated data alone, or integrated with clinical data, to make inferences regarding your health.

Looking at a person‘s purchase habits, organizations draw conclusions about his/her lifestyle and the health-related risks that he/she can be prone to. Dr. Granger says:

“Consumer-generated data use also has the potential to exacerbate health inequities if organizations do not consider the structural factors – for example, public institutions and policies – influencing the consumer-generated data. There is real concern that use of consumer-generated data may result in limited access to or denial of services based on perceptions of personal responsibility.”

Granger noted that healthcare organizations could use consumer-generated data to determine which patients to spend resources on, based on their health behaviors and which not to waste their time or resources on. She said:

“It is critical that organizations seek to understand the ‘why’ behind the inferences or risk scores reflected by the data. Otherwise you run the risk that certain individuals or groups may be marginalized, limiting access to the necessary resources they need to achieve their greatest health. Organizations may have benevolent intentions, but consumers can potentially be harmed if inferences about their health are inaccurate or if consumer-generated data is used in an inappropriate or unethical manner.”

The MITRE framework of Dr. Granger essentially serves as a safety net for healthcare organizations that are using consumer-generated data for health purposes. It helps them use it in a more critical and objective manner to prevent reputational harm. Lastly, it also actively preserves and fosters consumer trust. In the words of Dr. Granger:

“MITRE’s ethical framework addresses this gap by providing guidance to organizations regarding policies and governance processes to promote the ethical use of consumer-generated data in healthcare, as well as discusses ethical considerations, questions and constraints to guide consumer-generated data use. In light of the increasing use of machine learning in healthcare, we also make some recommendations to facilitate the ethical use of machine learning for analysis of consumer-generated data and other data.”

The MITRE framework provides values, principles and user-specific, actionable guidelines to support decision-making related to the use of consumer-generated data in healthcare.

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