Developing a Privacy Conscience: Avoiding a Cambridge Analytica-Type Privacy Crisis (Or at Least Being Prepared for One)

With recent media attention devoted to privacy breaches, protecting patient data has never been more important to the healthcare industry. Pharmaceutical companies are under pressure to build systems that ensure patient data is secure. Adding to this pressure, is the fact that the majority of companies are unclear about who is governing or touching their data, their internal mandates, and who will be the go-to in the event of a breach. Privacy must also be adhered to without hindering the information exchange that has become key for studying conditions over the long term and creating drugs that address this.

What makes the issue of privacy so challenging, however, is its emotional nature – it can put consumers off in a big way if a company is at the center of a privacy-related scandal, as recently happened with Cambridge Analytica. Realizing that there was a need for a discussion on how to meet the challenges that privacy concerns have presented, we hosted a webinar in conjunction with Fierce Pharma on “Developing a Privacy Conscience” and avoiding (or at least being prepared) for a privacy crisis. Moderated by Swoop and IPM.ai Co-Founder and CEO Ron Elwell, our panel consisted of Lauren Dubick, Director, Senior Group Privacy Policies Counsel at Novartis, Ronnie Sharpe, Co-Founder and COO of Savvy Cooperative and Founder of CysticLife, and Gerard Stegmaier, Partner at Reed Smith. 

Know Your Company

To kick off the discussion, the panel touched on the industry’s high-level mission, which speaks to why we advertise in the first place – to bring life-improving and life-saving medicines to patients in need. Pharma is incredibly regulated; as Laura points out, it is the most regulated industry behind aviation and nuclear, and this regulatory environment begats trust. The FDA has solidified this by setting clear guidelines for the “what” you can say and “how” you can say it in drug marketing with the goal of encouraging efficacy – but the “who” you can say it to, and how they are targeted is largely undefined, which gives way to challenges.

Following up on this, Gerard noted that consumer privacy legislation that has already passed (the California Consumer Privacy Act) or is on the verge of passing (The California Privacy Rights Act), are oriented around creating accountability for both offline and online activity. These local and federal regulations further complicate adhering to privacy demands, but optimistically, may lead to better outcomes and increased liability.   

To be covered regardless of the outcome, an organization should strategize their privacy plan with the idea that things will likely go wrong – after all, when dealing with a hot button issue like privacy it’s impossible to please everyone, everywhere. To get ahead of any potential incident, the company needs to decide who is accountable for decisions involving the use of personal data, including how it’s collected, used, and shared. Next, an organization has to rank its risk tolerance from a legal, reputational, and operational standpoint. 

Know Your Patient

Key to this is having a full spectrum understanding of your company through your patient. The panel touched on the importance of patient engagement beginning as early as ideation. Since Savvy’s mission is to bring the patient to the center of decisions made by all stakeholders, Ronnie shared success stories that demonstrate involving patients is a true difference-maker. Simply put, when a company knows what a patient needs, they create a better product. 

Lauren reminded the panel that while there’s an overall agreement that patients come first, the difficulty lies in reaching the patient in a way that doesn’t compromise them. “There has to be a balance between educating patients on medicines that could save their lives without being invasive and adhering to privacy protection,” she said.

To unpeel the layers around this and get direct patient insight, Swoop and Savvy conducted a survey that although only open for a short time, garnered a tremendous response – another clue that consumers are engaged and eager to weigh in. Ronnie explained that patients are very aware of healthcare ads and report noticing them daily or weekly. Aside from demonstrating consumers are tuned into pharma marketing, the survey revealed that placement matters. “Patients don’t want to be catching up on daily news or unwinding online and seeing ads that remind them of their condition,” he ventured. Companies should approach digital advertising cognizant that patients lead busy lives; they want to be healthy without being inundated with information about their health. 

Know Your Advertising Supply Chain 

Pharmaceutical advertising has become a complex environment that’s structured such that dozens of people (and automations) come between the marketer and the patient, thus creating an untold number of places where situations can go awry. Ron addressed this, asking the panel, “Given the complexity of the supply chain, how can companies allocate risk and protect themselves?” Gerard anecdotally offered that, “if both sides are unhappy, it’s probably a reasonable compromise.” He elaborated, noting that companies should strive for a negotiated resolution. Organizations must build relationships with their agencies and create contractual accountability. Central to this is knowing all parties in the supply chain and, specifically, who is touching their ads. 

Gerard closed off the discussion by sharing applicable advice from a former legal mentor. “We can't stop bad people from stealing, so what we have to do is try and find the good people and create an incentive system that keeps honest people honest. Ultimately, that's sort of the operational environment that we're working in and how we create that accountability in this supply chain. Perfection isn't possible, but we have to do better than strive for mediocrity.” Pharma is built on going above and beyond and it’s clear that finding a solution to privacy concerns that benefits both the industry and patients will be the next chapter in targeted marketing.





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