By: Shelley Nolden, GRYT Health Chairwoman, Acute Promyelocytic Leukemia Survivor.

After a festive holiday season, I’m afraid to step onto my new digital scale. But not because of the five pounds of Christmas cheer I now need to lose. Rather, it’s the health app I have to download in order to use the scale’s high-tech features that’s giving me pause. Because once I enter my info and sync the scale to the app, I no longer own my weight loss progress, Body Mass Index (BMI), or bone density.

In order to use the app, I have to agree to a Privacy Policy, stating that the company: “…may share non-identified and aggregated Health data with partners or the public. Data will always be disclosed in a way that it cannot be tied to a particular individual. We may share such data to professional partners such as hospitals, researchers or other companies, as well as to the public in blog posts and data studies.”

Without consenting to these terms, I cannot access ANY of the digital features that merited the scale’s $100+ price tag. And, by agreeing to these terms, I will have effectively paid the company to disseminate and re-sell my health data. If my resolve weakens, and I eat nothing but cheeseburgers and milkshakes for the next month, who-knows-what institutions may receive the data associated with my weight loss failure.

How many health/social media apps out there are “scraping” your health data and reselling it? Do you read the Privacy Policies before you sync these apps with your personal life?

Before I became Chairwoman of GRYT Health, I probably wouldn’t have stopped to read the fine print. But, through the continual reaffirmation of our company’s values and GRYT’s leadership role in the patient experience research field, I have gained a far greater understanding of what actually happens when you enter your personal information into your phone. And, what should happen.

As a cancer survivor, I know what it feels like to not be in control. Not in control of treatment decisions, of the way your body feels, of your odds of survival, of the cancerous cells you long to gouge free from your body. Everything seems like it’s happening to you, not by you. It sucks. Plain and simple, it sucks.

Through the GRYT App, GRYT Health has created an online, private support community, offering both educational programming and peer-to-peer connections. It’s a free resource for all those affected by cancer, and it DOES NOT come with the price tag of being coerced into giving away the right to your health data.

We view every person who downloads the GRYT App as a HUMAN, not an anonymized source of data. We do not “scrape” medical information; we do not “use” our community; rather, we show compassion and respect for every individual who comes to our platform.

And, through our research initiatives, we empower our community to have your voices heard on your terms. Pharmaceutical and other health companies need to better understand the patient experience in order to improve it. And, patients should have the ability to play a bigger role in the search for cures that will benefit us all. At GRYT Health, we bring the patient/caregiver voice to the companies that make their cancer treatments through completely voluntary participation in surveys and focus groups, compensating participants whenever possible. Additionally, the members of our app community receive advance invitations to participate in our research projects before we reach out to the broader cancer community.

Our goal is to put control back in the hands of those affected by cancer. And so GRYT’s promise to you is that we will never use or sell your data without your permission.

We encourage you to read our Privacy Policy, as well as those of any other health apps you use or come across.

The GRYT App, funded, built, and run by a team of patients and caregivers, is a free resource for those who need support — free of charge and free of coercion regarding the ownership of your health data.

If only the app associated with my digital scale were the same. We welcome you to interact with our app community freely, with the confidence that comes with knowing there’s no Big Brother recording your info and selling it to a third party.

You’ll find me there in the chatrooms. Feel free to ask me how I’m progressing with losing those five holiday pounds. Because when it’s on my terms, I’m happy to share.

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