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February 1, 2022

How transparency builds trust in medical data management

News stories about how personal data from internet browsers and apps are used have provoked a backlash, making many people more reluctant to agree to share theirs. This reluctance can be hugely problematic in healthcare. But people are more likely to provide consent for sharing their data if they know where it’s going and how it will be used. In this thought leadership article, Glenn Jackson – Syrenis CEO – explains why transparency is essential for building trust in data management, and the support that his company’s Cassie platform can provide.

People are receiving frequent requests for their data to be shared when visiting various websites or using platforms. The positive side to data protection regulations such as GDPR, CCPA, and POPI is that people are more likely to share data if they know it is safe and that they are in control of what they are sharing.

However, stories about what certain social media companies do with user data have created a reluctance amongst some individuals to share personal data. And this can be hugely problematic when it comes to healthcare.

Alongside complying with data regulations, platforms and websites must be open with the user about exactly what they are using the personal data for. And the number one way of building trust is to be transparent. A good example is when you go to a website and you want to load some tracking cookies onto a device, you need to ask clearly in a language that a consumer will understand. You should explain why you’re doing this, what your purpose is for using the data, and how you’re taking that forward.

People should also be able to opt out, either at that initial touchpoint or in future. It is important to give them the option to change their mind. Whether that involves getting rid of all the data or changing how it’s used, they need to have that control.

If you’re transparent with the data you have collected on behalf of somebody, and you allow them to change it, then people will trust you. Crucially, you have to follow that through to make sure you don’t end up using that data. But if we’re all transparent about everything, then we build trust.

I think that organisations that aren’t transparent will suffer in the long run. And it is the same with anything. There are brands out there that we trust. We trust Marks and Spencer and John Lewis, for example, because they have been delivering good services for a long time. And the same will apply to data, especially when it comes to healthcare.

It is vital to make the intent clear behind data use, and also make it easy for individuals to change anything they share. If somebody sends me some communications that I don’t like, I must be able to immediately unsubscribe or look at what personal information they hold and change it. That shouldn’t take a week to happen.

Glenn Jackson, Syrenis CEO

Cookies and profiling

On many sites now, cookies cannot load until the user has given their consent. But with people being continually asked for consent on cookie use, there is a danger of ‘cookie fatigue’ setting in.

I do not think people genuinely understand how sophisticated tracking and profiling systems are in the digital world. Social media platforms are brilliant at it. Some retailers are also excellent at understanding the user profile, behaviour, and their propensity to buy or click on items. It is an absolute science. Joe Public may think that it’s nice to share their photos on a platform. But behind that are enormous datasets that are profiling everyone. I understand that these companies are delivering a service to allow people to keep in touch with friends. However, they are also monetising that behind the scenes.

If you delve into the world of cookies, there are still tens of thousands of sites that are collecting data and injecting cookies onto your device. People are not always aware of what is happening with those cookies. Who knows where that data is going?

We did some research a few years ago, where we took around 100 of the busiest websites in the UK. We tracked them all and looked at the cookies. And 3% of the time, we could not work out where some of the data was heading.

This was data that could have been scraped off your browser, and it was likely being sent to unregulated areas of the world. People just don’t know. And that is still happening today in certain places. There are still many websites that are scraping personal data and pushing it out to unscrupulous sources.

How Cassie can help

The key thing with Cassie is that because it holds a single record of the truth across multiple platforms, you can then present that information to your data subjects. Instead of several separate data profiles for the same individual, Cassie brings them all together. And the fact that users can immediately see what information they have consented to builds trust. Crucially, Cassie can also ensure compliance with all data protection and data management regulations worldwide.

From a brand perspective, trust is invaluable. For certain social media platforms, the trust from users has been eroded because of how data is used or abused.

For brands deploying Cassie, by having a central repository of everything, and surfacing, they can build trust with their consumers. And loyalty is of huge value. We all think about selling to customers, but the key thing is retaining customers and having that longevity, which is where brands will ultimately benefit.

To have trust, you must deliver all the other aspects around it. That’s the endgame, and that is what we’ve done. We have some great brands that use Cassie and people trust these brands.

Only, you cannot see that they’re using Cassie, because our platform is always hidden. Think of Cassie as a foundational component that sits underneath platforms and websites. You won’t see our brand anywhere, because that’s not what we do. We are like a silent partner. We’re really about managing consented data, moving it around and allowing our customers to build trust with it. We are powering everything from underneath.

To learn more about how Cassie can improve the transparency of data management and consent in healthcare, download the white paper on this page.

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