Commentary

Privacy Versus Convenience And Connectedness: Competing Motivations

by Sarah Larcker , April 8, 2011

Enabled by the Internet, we have come to expect increasing levels of convenience in everything we do. We can order groceries online and have them delivered the same day. When we're traveling to a new city, there's no need for maps; just geolocate yourself on your iPhone. Looking for the best new LED flat-screen? There are thousands of online reviews and aggregators like CNET awaiting your visit.

It seems inevitable that the future of medicine is also trending toward convenience and crowdsourcing. For several years now, individuals have been able to create and maintain online personal health records that are portable and sharable, as opposed to tied to a single doctor or location. Online resources such as Patients Like Me enable crowdsourced self-reported outcomes data. Websites like ShareCare.org crowdsource answers to users' health questions from qualified medical experts including representatives from Mayo Clinic and CDC. Companies like 23andMe rely on collaboration and sharing of individual genomes and medical history to highlight genome-phenome connections that may merit closer scientific investigation. When a critical mass of EMRs are networked, this will enable the sharing of thousands of records of real patient outcomes, and evidence-based medicine will have a brand new, very powerful tool; the ultimate in medical crowdsourcing.

No one can deny that "peer-to-peer healthcare" -- as Susannah Fox of the Pew Research Center calls it -- is a fundamental part of our health-seeking behavior in today's world. Pew reports that nearly 25% of US internet users with a chronic medical condition say they have gone online to find others who might have health concerns similar to theirs. They are primarily looking for education, information, and support from others who have "been there."

But what will the general public decide is the tipping point between the societal benefits of sharing medical data and personal concerns over privacy breaches of such data? Many people already keep a close eye on the privacy settings of their social networks, and most information shared on these platforms is not remotely sensitive in nature (only 9% of current social media users are willing to share health information on these sites). The general public is incredibly opinionated when it comes to online privacy, as Facebook (for one) learned first-hand during the Beacon http://en.wikipedia.org/wiki/Facebook_Beacon debacle and subsequent attempts to monetize user data. There is consistent uproar about the need to limit tracking of online behavior, even though analysis of such data could result in targeted ad-serving that's actually pertinent to a specific person in a given time and place, instead of the irrelevant distraction most ads are currently perceived to be. If we're this concerned about the privacy of our most banal information, anxiety over privacy of our medical data -- even when sharing clearly results in greater convenience to us personally and a significant benefit to greater society -- promises to be much greater.

What level of privacy and control will be the minimum the public can accept in order to keep their most intimate data safe? In a world where evidence of pre-existing conditions can lead to insurance coverage denial, and exposure of having a stigmatized disease has the power to ruin a career, how many people will trust the security of personal online health records, let alone those that are networked?

Which motivation will dominate the rising conflict? Our need to keep private information locked away, or our perpetual drive toward convenience and connectedness? Time will tell as technology improves, transitions to online health records become mandated and widespread, and individuals are forced to take sides.

Marketers will also need to change tack in response to the rising debate. This world of mass connectedness and aggregation of health information, while created to benefit the individual and the scientific community, also provides a new weapon in the arsenal of irresponsible marketers. Unethical uses of crowdsourced data and public dialog have the potential to further damage the reputation of the pharmaceutical industry. Once such abuse is uncovered -- and it always is -- it will spell not only backlash but also public humiliation of the offending instigator.

To be successful, responsible businesses must be respectful and support each individual's outcomes by supplying useful information. It's no longer about pushing a message, but providing support. It's about helping, not selling. The beauty of the new paradigm is that by helping your customers, you are providing a unique service and gaining business while also building goodwill.

As the ongoing debate about privacy versus relevance comes to a head, businesses will have an opportunity to show where their motivations really lie, and whose side they're on. It's up to each one to determine the right way to do that.

Now sit back, and watch the fireworks; it should be a good show.

health, online, privacy

5 comments about "Privacy Versus Convenience And Connectedness: Competing Motivations ".

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Ed Hinde from Healthy Living Marketing, April 8, 2011 at 9:28 a.m.
Thank you Sarah for outlining the conflict that continues to arise. This issue applies to all brands regardless of the category as they seek to serve their constituencies. From your point of view, what role does government play in all of this?
Reply

Robert Hallock from Robert Hallock Consulting, April 8, 2011 at 9:33 a.m.

I totally agree that it's about helping, not selling. For instance, my client, Wellness Layers, finds that in establishing health/wellness consumer web portals, a winning combination is integrating very useful wellness tools, trackers, planners with community. It's the value delievered to the consumer which keeps them coming back time after time.

Pharma companies, of course, have issues with social media because of FDA adverse event reporting restrictions, but we have developed mechanisms to limit free texting, while, at the same time, encouraging a robust community.

The key is to have an honest approach in dealing with consumers and a sincere desire to listen to them and provide them value. All else follows.

Paula Lynn from Who Else Unlimited, April 8, 2011 at 11:13 a.m.

Wouldn't it be a wonderful world if privacy for any health issue could be automatically blocked by any and every marketer this side of the moon? Finally, you are telling people that job denial and health services denial is apparent and will only get worse. Now go and find out who to sue for discrimination. Right. In other words, stay off line as much as possible with your personal health information unless employment and insurance is not important to you since you will never know who is looking, what they find and what they do with it. Even if the government passed laws and forbid BTing, etc., it does not mean companies won't do it anyway.

There's also a sci-fi future here. Employers keep you just healthy enough to work until your services and skills are unworthy of their needs. Then you are on your own. If you don't make it, there are plenty of other unemployed to take your place at lower wages. Wait... sci-fi? Some polititcians' dream.

Sarah Larcker from Digitas Health, April 8, 2011 at 5:09 p.m.

Thanks for the comments.

Ed - I think government will play a very important role in this, though it's certainly to be determined what that role is. Between the proposed FTC "Do not track" system and Obama's push for a "privacy bill of rights," there's no way government can stay out of this issue, especially when it comes to healthcare (as more and more states will adopt/mandate networked EMRs for cost-cutting measures).

If you missed it, check out: http://blogs.wsj.com/law/2011/03/16/obama-to-push-privacy-bill-of-rights/

Interested to hear your thoughts as well.

Ed Hinde from Healthy Living Marketing, April 11, 2011 at 9:58 a.m.

thanks Sarah. Silly as it might sound, this issue in some ways parallels what happened in the distilled spirits industry 25 years or so ago. Unlike the tobacco industry, the distilled spirits category, knowing that the Federal government was soon to swoop down and take significant action, chose to self-regulate instead. This choice was the impetus for The Century Council where all of the major producers poured money and efforts in to the industry for outreach efforts to teach moderation. It's my hope that moderation will prevail in the governance of shared information as, when the right controls are in place and the Public is a willing participant, technology will be that great enabler we know it can be.