Why HumanFirst is Investing in a “Nutrition Label” for Health-Tech Security and Data Rights Practices

Connected sensors for at-home healthcare require a novel kind of risk-benefit analysis, and we teamed up with Carnegie Mellon researchers to make a new label for you

Imagine you care for elderly patients and want to recommend health technology that will allow them to age in place in the comfort of their homes. As a healthcare provider, you’re familiar with the risk-benefit analysis in the medicines you prescribe. But how familiar are you with the tradeoff associated with newer health technologies? And, do you even have the information you need to make that critical calculation?

As healthcare services head to our homes, new technologies are emerging for capturing biometric and physiological data. These technologies can improve health outcomes and save lives. At the same time, they risk data misuse, such as sharing sensitive information with data aggregators, or security risks that can lead to medical identity theft. In an ideal world, picking technology wouldn’t feel like a gamble.

Picture back before the 1906 Food and Drugs Act mandated labeling of key ingredients in drugs: “snake oil salesmen” sold products with health claims that were largely unverifiable and customers could either take salesmen at their word or forgo promising solutions to real problems. Similarly today, information about the critical components of health technologies can be hard to come by in a fast-changing health-tech ecosystem.

At HumanFirst we’re developing a similar sort of “nutrition label” for healthcare technologies, with a focus on data rights and security. The ultimate goal is to guide customers in considering the data risks of technologies and how to reduce them.

Last month, Apple launched a landmark privacy label as a tool for the public to better understand how their data may be handled by apps on the Apple Store. Mozilla has had one about products in general since 2017. Such efforts address a familiar problem for many; indeed, it feels like reporting about confusing privacy practices is as common as transparent data practices are rare.

The situation is no better when it comes to selecting health- and wellness-related technology. Often, the only reliably available information on a tech company’s data practices is buried in the privacy policy, terms of service, or sales language on the company’s marketing site. Customers left to piece together their own resources can’t be blamed for deferring to the recommendation of their doctors, friends, and family — all of whom may also be basing their ideas on incomplete information.

Health technology is intimately connected to its user, collecting sensitive information that could save a life in the right hands — and profoundly harm one if misused or abused.

With that in mind, HumanFirst aims to standardize a “nutrition label” to help clinicians and research sponsors make decisions about which products to use. Last year we co-authored, with an interdisciplinary group, an early prototype for a risk-benefit framework in Nature npj Digital Medicine covering validation, security, data rights, utility and usability and economic feasibility.

This year, to continue to refine the label, we worked with Carnegie Mellon University researchers to identify what information clinicians and researchers need to properly inform them of relevant data rights and security practices for technology they are considering adopting, and how to display that information.

What members of our team learned is being incorporated into the design of our label so customers can select technology on the merits of the product by smoothing the learning curve. Our methodology draws out and interprets the specific information customers need when evaluating whether a technology will do what they want it to do — and not do what they don’t want.

HumanFirst is excited by the challenge of taking on this project. As the New York Times and the Washington Post recently reported on the Apple privacy labels, even a label produced by Apple may not be perfect right out of the gate. This project will be long and hard, and, we believe, a worthy challenge and investment.

Creating a nutrition label for each of the products in our proprietary catalogue of more than a thousand biosensors will take time. We plan to release updates over phases and to work with makers of health technology so their information is complete and current. Stay tuned, I can’t wait to show you the finished product.

Sign up here to get updates on this initiative. We will be publishing a series of blog posts on this topic. You can also create a sandbox account to play around on GoHumanFirst.com.