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Patient Consent Required – It’s Not Your Data!

Google’s data deal with Ascension Health that was announced last week yet again reinforces why patients and advocacy groups need to be included, from the start, on major contracts involving personal health information (PHI). 

In one of Google’s largest data deals ever, Ascension will deploy Google enterprise services like cloud computing, search algorithms, and AI to develop smarter, more personalized care. Sounds like the right future-forward solution but without an active pursuit of patient consent, consumers who desire to own and control their own health data are a big sticking point.   

These “data deals” may not succeed if they’re perceived as back office scopes of work. More than that, with a lack of full disclosure, there is a missed opportunity to position this type of initiative for what it really is: a unique value proposition designed to improve health outcomes and reduce health expense.  If the “informational offer” of having one’s own data enriched and made more meaningful is accepted, health care organizations can emerge with a unique offering, while simultaneously engaging and partnering with patients in the data enrichment and analytical process.

Personal genomics and biotech company, 23andMe gets this right. When you register with 23andMe, you must review and agree to several screens of detailed terms.  These are not default terms and conditions. Rather, these are detailed descriptions of how 23andMe works with analytics partners, researchers, and even pharmaceutical companies, to analyze genetics, enrich the data, and then give the research and insights back to the customer from the studies in which they participate.  A key back-end business driver is thus converted into unique informational offers where customers can learn even more about themselves and their health. Most critically, they are fully informed and aware of the process.

In a fascinating twist of innovation, 23andMe has secured the true heart of people-based marketing today by taking personally identifiable information (PII) and augmenting it to develop distinct audiences that have unique needs while using their own authentic customer data.  As a result, 23andMe can learn what data really resonates with their audiences and better speak to their own individual interests, and identified needs or risks, in their customer relationship. Informational offers, data driven experiences, creative, and copy is now better informed by a “put the customer first” approach.

An in-depth analysis of this best practice exposes the gaps in in the Google-Ascension approach. The onus is now on Ascension to explain to its patients why (and how) the enrichment of patients’ data will be transformative for their personal care. Lesson learned: Bring the value proposition forward first, get consent, and tailor experiences for those who want to experience the value, and allowing those who don’t to opt out. Allowing customers direct use and control of their data as an owned asset is inevitable, especially if the vision of patient health records via blockchain comes into play.

Pharma marketers focused on people-based marketing may find that the implementation of this approach can take personalization to a whole new level. By delivering unique and customized experiences that are predicated on earning the “opt-in” consent for data-supported informational offers, marketers can increase brand stickiness and help their brand rise above the competition. We can also safely return to the philosophy that exemplified the original founders of the Pharma Industry. By putting patients first (in this case focusing on enriching data and offering informational offers), we can invent new ways to use all of this rich data, which will result in exercising better practices to achieve improved marketing outcomes.

We might assume, at great risk, that patients automatically want early diagnosis, reduced procedural or Rx expenditures, and protection against identified co-morbidities. But by gaining consent and bringing them into the process, marketers can clarify the value to them before the deals are struck and get back into the business of improved health outcomes for less money, something we used to call a win-win. Who would resist that?

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