Who Owns Your Social Health Data?

A recent Wall Street Journal article on Nielsen scraping data from patientslikeme.com has drawn attention to the privacy debate regarding personal health information. It’s important to note that Patients Like Me (PLM) encourages patients who suffer from specific conditions to actively record and share their health information with the PLM community.

I have used this blog to express my opinions about social media and privacy. Here, I declared, “your stuff isn’t worth anything.” My comment was a generalization aimed at the picture of a cat wearing a turtleneck that someone posts on Facebook or the 140-character “ode to cheesecake” shared on Twitter. I stand by that statement; “they” aren’t interested in ownership of gems of that ilk.

However, your stuff is worth something, just not in the way many people think it is. Your stuff is valuable to marketers. It’s called data mining. They send internet applications (called bots) to collect your stuff,  mix it with other people’s stuff, then analyze and sell it. Then they roll around in huge piles of gold coins they store in their vaults, of course. Patients Like Me knows about this because, as they tell you in their privacy policy, they do just that (minus the gold coins), they just try to do it transparently and responsibly. PLM just got snippy when Nielsen figured out they could log in under fake accounts to do the same thing. Nielsen did get caught violating the terms of service of the site, and they stopped their bots from scraping.

There is value to the public health if social health data is compiled into a composite form. For example, what if:

• A group of patients using a specific drug suddenly report a side effect that wasn’t caught in clinical trials
• The entire population of Springfield complains about a local hospital being dropped by an insurance company and threatens to find another insurance company
• A diabetes blogger suggests a new feature for an insulin pump and the entire online diabetes community weighs in
• Digitally-active physicians chime in and correct misleading information about a disease that is proliferating on the internet

What’s alarming is that users may be contributing information to a site that can be combined with other public data and used to identify who they are, what they suffer from, where they live, etc. In other words, someone can scrape data from the entire internet to piece together your personal puzzle, looking something like: Alphonse Brownstone, 123 Main Street, chronic earlobe fungus, likes chocolate-covered tater tots, 1987 conviction for public drunkenness. Needless to say, this poses an issue for privacy wonks and you should be worried about that.

Whether we like it or not, data scraping is what makes the internet useful and free. Turn that off and all of our favorite sites will have two choices: charge for service or shut down. Some digitally engaged patients already expect their information to be analyzed, they just want to be treated appropriately. Some research firms are asking for an open conversation about privacy.

So what we really need is some sort of Declaration of User-Generated Content that spells out exactly what everyone’s responsibilities are. Some examples:

• Organizations who own digital properties that encourage User-Generated Content must allow users to control who their content is shared with
• Organizations who scrape the internet for data must make every effort to avoid personally identifiable information and publish data only in composite views
• Individuals who publish their own content on the internet must assume that the information is visible to everyone unless they have made a clear effort to block that content from the public view

I’d put my Phil Hancock on that. Would you? If something is missing, tell us in the comments…

BlogWorld Social Health Recap Part Deux

Keynote: e-Patient Dave

I’ve seen Dave speak in the past so I was thrilled that he didn’t just pull out a standard keynote. CLARIFICATION: Having seen Dave speak once in the past, I was thrilled to see he’s not the kind of speaker who pulls out a standard keynote. If you want to understand the profile of the fully engaged patient of the future, find out where Dave is speaking next… and if he asks for his data, give him his damn data!

Session: Health Care Industry Issues

Industry Stats; Industry Panel

Marc Monseau of Johnson & Johnson moderated this panel with Greg Matthews, Bob Stern from MedPage Today, e-Patient Dave and Frank Eliason. The discussion extended into the audience where physicians, patient advocates, lawyers and regulators from the industry added to the conversation. Some of the main takeaways were:

Session: Social Networks and the Medical Blogosphere – Compatible or Competitive?

Kim McAlister (emergiblog) moderated a discussion with bloggers Kevin Pho (KevinMD), Bryan Vartabedian (33Charts) and Kerri Morrone Sparling (sixuntilme) about the decisions they make when blogging vs. engaging in social media platforms.

The two big notes in my notebook:

Blog to create value; Use social networks to develop relationships.

Whether it’s conscious or not, these successful bloggers have a keen sense of content strategy. The key to engaging their audience across multiple social platforms is knowing what they are publishing, who it is for and what the best outlet is for that message. Read Kerri’s thoughts here and Dr. Pho’s take on it here.

Session: Whiteboard & #SOCHEALTH

Marc Monseau of Johnson & Johnson and David Armano from Edelman Digital bravely facilitated an open-format whiteboard session that energized everyone in the room.

The audience represented many of the social health stakeholder groups: “Big Pharma”, patient advocate / e-patient bloggers, blogging health care professionals, consultants, and interactive agencies. Not represented, but ultimately required at the table are the insurance industry and the FDA.

What transpired was a frank conversation about the current state of the social heath space. Marc passed the microphone and facilitated one of the most productive and collaborative conversations I‘ve witnessed at a national conference. Armano’s visual notes can be found here, and if you follow the Twitter hashtag #sochealth you’ll likely find a slew of summaries. My thoughts:

1. Social health communities set up by patient and physician bloggers are thriving. Decades of mistrust across many of the players and the lack of trusted, comprehensive, community-curated information sources are becoming an issue for the leaders in these communities.
2. Industry can have a positive impact by simply providing reliable information. The communities are independently effective at assessing, curating, and sharing information they find to be credible and valuable.
3. It’s important to note that “information” means data that helps patients and clinicians understand medical conditions and the risks and benefits of treatments. We are not talking about marketing messages, pretty pictures or fancy gadgets.
4. While it wasn’t highlighted throughout the day, I think it’s important to note that research demonstrates that industry-provided information is regarded as biased more often than it is considered to be balanced. This is a barrier we will need to continue to address over time, but the first step is to clear out the messaging that created those perceptions of bias in the first place.

Wrapping Up

The final keynote was Rohit Bhargava interviewing Doug Ulman about how http://www.livestrong.org/ has embraced social media. Doug is a two-time cancer survivor, the CEO of Livestrong, and an inspiring speaker with a calm demeanor. Livestrong practices deliberate strategies when engaging their audience through social media. Go here for Rohit’s summary of the session and a video of the discussion.

After that, a bunch of us got together for some good food, a few drinks and a lot of laughs with new friends. Nice way to end the day.

BlogWorldExpo ’10 Recap (Social Health)

Phil and I just returned from BlogWorldExpo 2010 in Las Vegas (it’s a tough job, but somebody has to do it), and my mind is swimming with ideas sparked by the smart, passionate people we encountered there as part of the Social Health track sponsored by Johnson & Johnson. As a company we’re extremely interested in the potential of social media as a part of the broader healthcare conversation, and are engaged in discussions about it daily – so this was extremely relevant for us.

As usual, we’ve got interactive sketchnotes from the sessions up on Flickr with a bunch of links to the speakers, their blogs and causes, and recommended resources. Note that Phil and I split up for coverage where there were multiple sessions held in the same time slot, so he may chime in with some additional insight – but here’s my quick recap of the day.

Badges Of Honor: BWE10 Social Health Track

Things kicked off for us with a keynote by e-Patient Dave. I had been aware of him in the past but hearing his story first-hand was incredible – it was the perfect way to start the conference. When you’ve got a serious lump in your throat 15 minutes into the day, that’ll do wonders to open your mind and make you want to change the world. I truly believe that the other participants we met there (doctors, patients, industry folks, and consultants) were all interested in doing just that.

Dave’s core messages were as follows:

1. Every person must accept a certain measure of responsibility for their own recovery from an illness (quoting Norman Cousins).

2. Networked patients will move from being passengers to being drivers of their healthcare decisions.

3. We are all patients, and as bloggers we are free to be “mouthy”. This has the potential to elicit positive change.

4. The chance to be engaged in your own treatment is a huge mood booster and motivator – it’s a much better alternative to helpless passivity.

5. Laugh, sing, and eat like a pig.

Next was a panel moderated by Trisha Torrey, including patient bloggers Amy Tendrich (Diabetes Mine), Jenni Prokopy (Chronic Babe), and Lisa Emrich (Brass and Ivory) – and what an eye opener. There were great discussions about the types of resources these folks recommend to their readers, how they validate them, the role they’re intended to play, and what they believe are the right ways to engage with industry. However, it goes beyond that – anyone interested in how to create vibrant online communities can learn volumes from what they’re doing, but the work being done here to provide information and fellowship to folks dealing with chronic conditions is so unbelievably important…I had no idea how traditionally underserved these populations are, and it was a game changer for me. In fact, so was hanging out with the speakers late into the evening (add Kerri Sparling from Six Until Me, Manny Hernandez from TuDiabetes.org and Scott K. Johnson to the mix) and not only being allowed a glimpse into their unique worlds and perspectives, but literally laughing until my face hurt. Inspiring and challenging peeps, these.

The Name Of The Game

Next was another panel discussion moderated by Bob Brooks from Wego Health (another seriously funny guy, with whom I share an uncannily parallel past) including the aforementioned Manny H. and Amy Kiel of Una Vita Bella. This session provided more insight on ways in which industry could provide value and partnership without diluting perceived validity and authenticity, tips on ways to manage the information fire hose as a patient and a patient blogger, and exactly what patients are looking for from these communities. Here we’ve got three basic tiers of information needs coupled with the desire to network and find others in similar situations:

1. What is this condition? What do I have?
2. How do I treat it?
3. How do I cope with it? What practical advice is there on how to live with this condition?

We also attended a few general keynotes outside of the Social Health track, but they were much more broad and I’d like to stick to the script here. So, we’ll jump to the final session of the day – a whiteboarding session facilitated by Marc Monseau form Johnson & Johsnon and David Armano of Edelman Digital (check out his sketches from the session), which everyone I talked to later spoke of as a highpoint of the day. Basically it was an open conversation among folks from the various communities represented, addressing the question: “OK, we’ve all gained some great new insight throughout the day…what are we gonna do about it?”

The conversation was fast paced, passionate, and intense – the microphone traveled quickly around the room and the group was highly engaged. Where did we end up? There was a lot of great thought captured visually by David, and ultimately the day concluded with this statement: as different groups of folks with different needs and drivers, we need to come together to envision the future of healthcare in the same way Apple did in 1987 for the future of computing – no one group can go away and successfully do it on their own. Then, as a broader healthcare community, we can begin to make strides toward achieving that shared vision. It has been 23 years since Apple’s vision and they’ve achieved a good deal of what they dreamt up but not all…yet. How long will it take us?

The High Road: Conversion vs. Coercion

To follow-up on Russ’ Teavana post from last week, I thought I would take some time to further expand on good sales experiences from a designer’s perspective. As experience designers we would create a few buyer profiles based on analysis of elements like existing customer traffic, consumer objectives and client business objectives. In the case of Teavana, I will guess there are three types of buyers to consider:

• The Browser – someone wandering into the store just to see what it’s all about
• The Learner – someone intending to get an education about tea or tea products
• The Experienced Buyer – someone who knows tea or has purchased from Teavana before. Ideally, your experienced buyer becomes a loyal customer.

This is an example of cascading user types and how your experience design and sales model can focus on converting one user type to another. Ideally, you want to convert browsers into learners and learners into experienced buyers. In the long run, a large portion of your revenue would come from your experienced buyers. Train your staff to focus on these conversions – even if the success rate is low – and you’ll experience long-term success.

Volumes of guides have been written on the topic, but most sales instruction takes the perspective of the sales person rather than the customer. After a dozen years on the technology side of the Sales Training industry, I have seen a lot of sales models. There are a lot of self-proclaimed sales experts out there whose models treat the buyer as nothing more than a mark who simply has to be convinced. How they are convinced is the “secret sauce” of each sales process.

Here’s a secret, though: regardless of your sales model, your best sales people put themselves in the head of the customer, understand their needs, and then fulfill those needs. Furthermore, if they don’t have a solution, they recommend someone who does. It’s that simple.

So, how do we drive those conversions? Well Teavana, it’s not by alienating your customers or aggressively upselling them on things they don’t want. Let’s look at a few of my own experiences as a retail customer that demonstrate conversion.

Customer Intimacy

I had the pleasure of buying a custom suit a few years ago for my wedding. I entered the store as a learner, but quickly became an experienced buyer. Even though they have customers who spend much more than me, they still remember my name when I walk into the store to buy a pair of socks. Any man who has ever been fitted for a completely custom suit has likely had an excellent sales experience. From selecting the fabric and style to your final fitting – the entire experience is about you. For the price you pay, you deserve it… and the next time you want to buy someone a pair of cufflinks or a tie, you’ll probably go back.

Bryn Mawr Running Company: GETS IT!

Expertise

You don’t need to be purchasing high ticket-item products to have an excellent sales experience. Very recently I wandered into Bryn Mawr Running Company to purchase a new pair of running shoes. I had a strained tendon from the discount running shoes I was wearing and I was wondering what the store had to offer. I was a browser, but the sales associate approached me and casually asked if he could help. After explaining my dilemma, he asked me to take 10 steps away from him. When I turned to walk back, he was practically lying on the floor watching exactly how my foot landed. He pulled three different pairs of shoes that would address my needs. We made the final selection based on fit and comfort. We never discussed price and there was never a hard sell. By chance I selected the cheapest pair. They were still double what I paid at the discount store, but it was a small price to pay for a relatively painless morning jog.

A Reason to Return

Excellent service is something we come to expect when paying a premium for a product. Most new customers who walk into Teavana expect more than a $3 box of stale tea bags, they just don’t know what to buy. Teavana has taken advantage of this need for consultation. I suspect this contributes well to short-term sales, but really destroys the rate at which your customers return. They may be able to convert a browser to a learner, but they fail when converting the learners to experienced buyers. As we’ve seen in the comments and in the articles posted – customers don’t appreciate being aggressively upsold every visit.

My tailor now has my measurements on file. As long as I haven’t subsisted exclusively on cheeseburgers and onion rings since my last visit, I could call in a brand new suit. Bryn Mawr Running Company keeps track of my sizes and brands for me. I am a dedicated customer to both stores even though the prices are higher…something I wouldn’t be if they had tried to sell me things I don’t want.

The profiles above are a simplistic view of Teavana’s business model. I offer them up to prove a point: developing a customer-focused sales experience takes time and analysis. Even so, while sales is often about conversion, it should never be about coercion. The most talented and successful sales people I have ever worked with all have one thing in common: they know when to walk away. Their time is way too precious to be spent convincing someone to buy something they clearly don’t want or need – especially if that means that’s the last time you’ll see them.