The Shift in Patient Ownership of Data and Privacy Issues

Patients are now, more than ever, empowered to own their personal healthcare experiences. Digital tools have shrunk the world down to the size of a phone, tablet, or laptop, putting healthcare services at the responsive end of a series of well-placed buttons. Growth in the accessibility of high-speed internet has contributed to this success. The pandemic has sped the wide-scale adoption of live digital person-to-person interactions. It feels like, in certain parts of the country at least, the concept of digital first (a term used regularly in marketing conference rooms) has started to come to fruition. But most great things also have their negatives.

Digital tools make us more efficient and autonomous but also produce more trackable data with implications for privacy. Consumers have become more cognizant of this trade-off and powerful entities have begun to react. Apple has engineered their most valuable product, the iPhone, to be highly protective of user data. They have also focused their latest marketing campaign on their commitment to privacy, answering the call for more privacy across the internet while also raising collective awareness about the issue.

Many state governments have reacted as well, enacting or considering legislation modeled off of the California Consumer Privacy Act (CCPA) or the General Data Protection Regulation (GDPR). At the federal level, there is general appetite to promulgate broad privacy standards, but still minimal electoral incentive to move forward. Considering the size and power of these private and public leaders, they are still in many ways canaries in the proverbial coal mine of the privacy debate. Many of the proposed solutions floating around the industry heavily favor big tech companies, who—fairly or unfairly—are the objects of privacy-related scorn and the benefactors of the most profound changes. This is a paradox that needs to be solved.

The Data as a Commodity Debate

All of this has brought about the question: is data a commodity, or more importantly should it be? A lot of the proposed regulation and public discussion regarding privacy treats it as such, but the question itself is more of a provocation than a call to address an issue that has a straightforward set of answers. We can all probably agree that consumers and patients should exercise control over their privacy and be compensated in some way if private information is used in commercial transactions. We have the expectation of privacy within our personal physical spaces such as our homes and cars.

The digital ecosystem, however, has always been governed by a slightly different set of privacy expectations; more personal-level data is generated and collected without clearly understood standards of ownership and use. The issue boils down to what is private versus public, something that is clear in the physical world but less so online.

Let’s look at a real-world physical versus digital example. If we enter a physical store we can expect to be surveilled by security cameras and observed by helpful staff. Those data are used to enhance customer in-store experiences in the aggregate and each customer does not expect to receive compensation for the data they generate to aide in the development of a better experience for everyone else. In a digital scenario, if we enter a commercial website and browse items, put them in a cart, and do all the normal shopping things you’d expect, we understand that our activity generates granular user-specific data and it may be used to enhance experiences in the aggregate and also at the user-level (the main difference from physical interactions).

The differentiation in data collection is driven by the nature of how technology can easily collect the most granular levels of data with massive scale and efficiency and the social conventions that govern data use in the absence of regulation. In the digital example, two people have claim to the data—the site owner and the user. Today, only the site owner and their partners hold the commercial rights to any data generated on their property, but how these data may be used in the future, in commercial settings, is at the center of the privacy debate.

This gets to the difference between first-party and third-party data. Third-party data, usually in the form of cookies, is in the process of being weeded out of the marketing landscape, which in most cases, are data used for commercial purposes and lack implicit consent from the user. First-party data requires consent and is built on an exchange of value. The user provides an email address and other personal information and in exchange they could get a range of benefits—informational newsletter, coupons, preferential offers, etc.

In this case, both sides of the data creation process are getting value; we could even call it non-monetary compensation. The site owner gets actionable information for their business and the user gets a more simplified experience and a stream of information or incentives. But does it go far enough?  Many empowered consumers believe the renumeration should extend beyond that legacy exchange and exercise more ownership over the data they generate into the future. They want, in effect, for the data about them to be private, even when they are in the digital approximation of a non-public setting.

Do We Need to Reimagine the Web?

It’s not clear how that would work in practice, even though it’s become a hot topic of conversation. The most fantastical of the solutions is Web3, a decentralized internet built on blockchain technology that effectively makes everything public. It’s a little bit of a libertarian fantasy that has neither proven to be completely decentralized to date nor solved key issues related to security. The practical and profound questions of regulation in the context of speech, crime, and other possible nefarious effects have, so far, been left unaddressed.

It’s hard to fathom that we could jump from a world that is starting to seriously address digital data regulation to one where none exists at all. Web3 concepts will yield some practical applications at the margins of the digital ecosystem and grow beyond the more visible speculative bubbles such as crypto-currency and NFTs, but the idea of a radical reorientation of our collective experience of the internet is nothing more than a pipe dream, albeit dressed up in fanciful language of empowerment and freedom.

A more viable long-term solution is taking shape in the form of what I call Web2.5, a hybrid of our current internet (Web2) that trades data for services to one that empowers consumers to exercise more control over the data they produce but still within a regulatory framework that maintains privacy and security. Invisibly is one company that has made a significant investment into this model. They have built a consortium of news and content providers that users can access while maintaining ownership of the data they create by keeping it private and paying subscription fees or making their algorithm-free interests available to advertisers in exchange for points that are then used to bypass paywalls and get compensation from their activity. This model relies on Invisibly maintaining data management integrity and is a giant leap in the direction of more user ownership of data and privacy. If Invisibly is successful, which is a major open question, then we could reasonably expect to be making ad-supported data revenue versus private subscription decisions with many digital services in the future.

Empowering Patients with Data

In the healthcare space, three leading-edge companies with similar approaches to patient empowerment—all in the spirit of Web2.5—are PatientSphere, Embleema, and Health Wizz. Each company uses some form of blockchain as the core technology that allows patients to exercise ownership over their healthcare data. They aim to take data out of the myriad health records systems, wearable devices, and other health tech tools, and join them in one customer-controlled set that travels with the patient from service provider to service provider. The platforms also provide ways for patients to participate in trials, get a stream of relevant information, and in some cases, get compensated for the data they produce.

Our healthcare system is complex and lacking interoperability among digital systems. Allowing empowered, connected, engaged, and proactive patients to take ownership of their heath data is a move towards a more efficient system. It has the potential to reorient how healthcare is delivered and the ways in which advanced computer systems can aide doctor’s practices. However, we are still very far from that reality and the leading-edge issues and technologies in the patient empowerment debate only impact a subset of the health market today. But we can be optimistic about the future and where privacy-infused technology can lead us.

Pharma and the larger health and wellness sector have a significant opportunity to lead in developing Web2.5-style relationships with patients and consumers in concert with leading endemic media suppliers. In an article already riddled with industry buzzwords, allow me to introduce one more that is central to this topic—omnichannel. The idea is foundational to future-proof marketing strategies and is based on the concept of providing value to customers with every interaction, a notion that will transcend the privacy debate if it is done well. In the meantime, digital tools that empower patients will be the bridge that gets us to an ideal digital ecosystem.

  • José Ferreira

    José Ferreira is EVP, Product Strategy & Transformation at CMI Media Group. José is primarily responsible for defining strategic platform, technology, and data solutions that continue to enhance CMI Media Group’s marketing ecosystem and differentiates the organization as a cutting-edge market leader. Jose is passionate about never settling for the status quo and pushing the boundaries of what is possible for his clients.


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