I recently had a conversation about the mountain of health-related mobile apps that are currently available for “free”. I was lamenting how many people were downloading and using these solutions without fully understanding that their health data collected by these apps was being used to market products and service to them. At that point, the person I was speaking with asked a poignant question: “If the recommended products and services are truly useful and would help that person, then isn’t that a good thing?”

I’m curious to know what the HCLDR community thinks about this. Is health data sacrosanct and shouldn’t be used for any purposes other than directly for care? Is it okay if the person is fully informed on how their data could be used? Does your answer change depending on who is using that data (ie: a hospital, an insurance company, a third party company).

You Are the Product

Back in 2012, I read this Forbes article and saw the phrase: “If you’re not paying for it; you are the product”. I’m not sure who originated that phrase, but it has stuck with me as the freeium model continues to dominate the app market.

As a quick refresher. In a “freeium model”, users are given access to an app at no cost. The free app usually has limited functionality. While using the free app, users are sent marketing messages, within the app and via email. These messages usually include:

1. Offers to upgrade to the full functional version of the app.
2. Offers for other apps from the same company
3. Offers for other apps from the partners of the company
4. Offers for other products and services from advertisers who pay the company for the right to market to their end-users (you)

Most people do not have an issue with #1 and #2. #3 is a little sketchy if it wasn’t made clear, but most accept this nowadays. It’s #4 that is problematic when it comes to health data.

Health Data for Marketing

I won’t name names, but there are many companies who have built their business models on using the collected health information from its users to market products and services to them. Sometimes that means actually selling the data to a different company. Sometimes that means showing ads from other companies to users of an app based on their profile information.

Companies that do either of these things WITHOUT informing their end-users are certainly ones to avoid. That’s not what I would like to discuss with HCLDR. Instead, what I’d like to hear is under what conditions would it be okay to use health data to market useful and helpful solutions to end-users.

Consider these examples:

• A new mom is notified by the hospital of a making-baby-food-at-home class that is being held by the local grocery store
• A patient who recently had hip surgery gets a text from their family doctor with a discount code for a mobility assistance device that could help them recover faster
• An employee is sent an offer for at-home cleaning services because they mentioned to their company HR that they are struggling to help out with aging parents
• A policyholder receives a mailer from a c-pap company for a free trial of their product because they recently answered a survey from their insurance company about sleep apnea
• A student gets an offer to take part in a new contraceptive trial based on information they have been tracking in an app that made it clear they will use the data to send targeted/useful ads

Do you agree with any of the above?

Join us on Tuesday August 30^th at 8:30pm ET (for your local time click here) for the weekly HCLDR chat where we will be discussing the following questions:

• Q1 Would you be okay with using an app that was clear it was going to use the collected health info to send you truly useful product and service offers? Why or why not?
• Q2 Does your comfort level with using health data to suggest useful products change depending on the organization using that data? (ie: your doctor, an insurance company, your employer, an app maker)
• Q3 What kinds of products or services would you be comfortable getting offers for through an app? What would make you uncomfortable?
• Q4 Does there need to be better enforcement to protect health data or is voting with our feet and public shaming enough?

References

Goodson, Scott. “If You’re Not Paying For It, You Become The Product”, Forbes, 5 March 2012,  https://www.forbes.com/sites/marketshare/2012/03/05/if-youre-not-paying-for-it-you-become-the-product/?sh=2396b0e95d6e, accessed 28 August 2022

Wade, Derick. “Ethics of collecting and using healthcare data”, BMJ, 30 June 2007, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1906611/, accessed 28 August 2022

“Ethics Of Collecting And Using Health Data”, Global Health Data, accessed 28 August 2022

Ballantyne, Angela. Schaefer, Owen G. “Consent and the ethical duty to participate in health data research”, BMJ, 2018, https://jme.bmj.com/content/44/6/392, accessed 28 August 2022

Fowler, Geoffrey. “You agreed to what? Doctor check-in software harvests your health data.”, Washington Post, 13 June 2022, https://www.washingtonpost.com/technology/2022/06/13/health-privacy/, accessed 28 August 2022

Wetsman, Nicole. “Hospitals are selling treasure troves of medical data — what could go wrong?”, The Verge, 23 June 2021, https://www.theverge.com/2021/6/23/22547397/medical-records-health-data-hospitals-research, accessed 28 August 2022

Steimer, Sarah. “The Murky Ethics of Data Gathering in a Post-Cambridge Analytica World”, AMA, 1 May 2018, https://www.ama.org/marketing-news/the-murky-ethics-of-data-gathering-in-a-post-cambridge-analytica-world/, accessed 28 August 2022

Image Credit

Photo by ThisIsEngineering: https://www.pexels.com/photo/code-projected-over-woman-3861969/