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Research Responses to Patient Privacy Concerns


How can Pharma balance the need to access to patient data and still respect patient privacy? One approach is to access patients through third-party online communities, writes Peter Houston.

Peter Houston

It’s difficult to overstate the importance of patient research in pharmaceuticals, both in relation to improving health outcomes and commercial success.

The ubiquity of connected communications technology, from the social networks to wearable apps, has opened unprecedented access to patient populations. Equally, big-data processing facilitates the analysis of patient data for research on a scale unimaginable just a decade ago.

But with increased data availability, capture and analysis comes increasing concern over patient privacy.

Privacy concerns are not unique to pharmaceutical research and marketing. Some analysts believe the incredible rise of ad blocking has been fuelled as much by privacy and security concerns as the desire to avoid annoying banner ads. “There is a valid security and privacy reason to run ad-blocking software”, says one commentator in a New York Times article on the ad blocking wars.

Although the revenue crisis following in the wake of ad blocking is acute for publishing, the industry will find new ways make money, probably improving the customer experience in the process. But pharma doesn’t really have that luxury – patient research is the foundation of improved outcomes and commercial success.

So how can Pharma balance the need to access to patient data and still respect patient privacy?

One approach is to access patients through third-party online communities.

Platforms like Facebook can play their part with some disease populations, but community based platforms provide a more focused level of support and guidance to patients and caregivers going through similar experiences.

Brian Loew is CEO of Inspire, a social network for health that connects almost 1 million patients and caregivers. He agrees that patients, to a degree, should be concerned about online privacy, but he thinks that discussions about privacy often miss the point. “What all of us want and need is to confidently control how our personal information is shared and used.”

He believes loss of control is what upsets patients - being surprised, tricked, or having an implicit promise broken. Inspire tries to avoid these issues with a community team that monitors for spam and possible scams, as well as inappropriate behavior. Loew says he is excited that a lot of this effort is crowdsourced. “We work with our members in tandem to help keep the community clean and have a peace of mind.”

He thinks communities like Inspire are trusted, for the most part, more than individual pharmaceutical companies.  “Communities are bonded by people who are going through similar issues. The disease state can create an atmosphere for people in healthcare social networks in which they trust one other.” He also thinks that partnering with over 100 national non-profit advocacy organizations helps Inspire increase that trust.

Loew describes his network’s mission as ‘to accelerate medical progress through a world of connected patients’. Inspire seeks to achieve this by connecting community members, in a transparent, opt-in basis, to life science companies for the purposes of research. “We are able to help pharmaceutical companies, in a permission-based manner, better understand patients' perceptions and provide educational materials on latest clinical or treatment updates.”

He gives the examples of creating awareness of an ongoing clinical trial recruitment and conducting market research conducted around how a mobile app can help patients with chronic conditions better manage their disease.

Narrow market research is served well by data from online communities where groups identify with a particular disease state; the online health networks deliver targeted research opportunities based on carefully managed permissions. But there are less personal ways to use patient information to support pharmaceutical marketing with data informing location based research for pharma companies trying to assess patient populations in specific towns, states or regions.

Semcasting, a data management platform based in Massachusetts, helps pharma marketers reach physicians, but has no access to any patient specific health data. “The healthcare data we manage is at the provider level,” says CEO and Founder Ray Kingman. “Our protection of that health data is managed at an aggregated geographic level to shield any reference to individuals.”

Kingman explains that it is possible to deliver accurate targeting without the level of personal data that raises privacy concerns. “Healthcare touches everyone and the volume of data that is generated produces a statistically relevant level of trending and forecasting which informs targeting without ever touching an individual or household.”

He says predictive analysis is about prioritizing the likely best audience over the least likely.  “Our technology, working with de-personalized anonymous data, allows us to do targeting efficiently and safely.”

Semcasting works with pharma companies around specific drugs, drug classes or medical specialties. Kingman sees the pharma marketers objective as to increase awareness among the prescribers that are most likely to be engaged with the product they are selling.

“They can come to us with a specific brand or generic and we can identify the distribution patterns as trade areas of competitive or complementary drugs.  We can do the same with the physicians who have an aligned specialty.”

The technology defines geographic service areas around points of healthcare service (hospitals, labs, physician offices). Service specialties are correlated to an indexed score of aggregated population demographics based on a minimum of 200 households per zone.  These geographic zones are then correlated to treatments and the distribution patterns of brand and generic drugs and the targeting of advertising is deployed at the zone level.

Patient data is a powerful research tool for pharma, both clinically and commercially. But respect for patient privacy is paramount and pharmaceutical companies face unique challenges if they are to avoid impeding the valuable exchange of patient care information. Clever use of third-party geographic and patient community data, may be part of the solution.

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