The Patient Graph

Social Graph
Image by Matthew Burpee via Flickr

We all know social networking as a major time-suck, real-time news source, and practical job-hunting tool. We also know that patients can often get better health information from the web than they can from their health care provider (e.g. When ‘social networking’ meets ‘the search for health information’ we get online patient communities. Facebook, Twitter and GetSatisfaction are just the tip of the social iceberg. PatientsLikeMe and CureTogether are just two of the best known of dozens of web-based social networks for patients. The NY Times calls patient-centered social networks a “Lifeline for the Chronically Ill.” For medical device companies, patient-centered social networks bring new challenges and new opportunities.

As online communities have evolved from BBS’s and usenet groups, to forums and yahoo groups, to social networks and blogs, the quantity and quality of direct patient-to-patient interaction has dramatically increased. In March 2009, an article in Forbes called these new patient-centric social networks a disruptive innovation in patient care (Disruptor of the Month: Creating A New Kind Of Health Care Community by Renee Hopkins Callahan). If you’re developing a novel device or a novel procedure, there’s a chance you are already the subject of an online patient conversation. The more patient-facing your product (either used-by or implanted-in a patient), the more likely patients will share their experiences with each other online.

Any day now, the FDA is expected to issue some of its long-awaited guidance on its approach to the regulation of social media and the internet. Social media, though, does not move on the FDA timeline. While this blog post may need an update when that guidance comes out, medical device companies are already way behind the social media curve.

What does online patient interaction mean for medical device companies? How can medical device companies interact successfully with patients online?

Getting to Know Social Networks for Patients

Check out PatientsLikeMe, which facilitates patient-to-patient interaction around a number of chronic diseases. PatientsLikeMe has pioneered the collection of procedure and outcome data from patients, and enables industry to access aggregated de-identified patient data for research use.

Check out ongoing “clinical studies” at  where registry-like data is collected from patients and aggregated for research use.

Check out, which is working with Children’s Hospital of Boston to track, share and compare diabetic health information for research advancing diabetes care.

A longer list of patient social networks was compiled in a 2008 paper here (information current as of 12/23/08).  The NY Times listed several of them in a 2010 article.  (Unfortunately, the list of health-centric social networks on the Health2.0 website is very incomplete).

In 2009 Newsweek reported on pharmaceutical companies use of social networks to recruit and retain patients for clinical trials.  A service provider,, uses Facebook to recruit patients for dozens of companies.

Blogs from patients and their families are important too. Check out patient blogs on PKU, lupus, and LVAD’s to get a flavor.

Selected Readings on Interacting With Social Networks for Patients

Lots of good articles have been written on social media relevant to life science companies, and they cover a lot more than I can fit in a lengthy blog post. Here are a few you should read:

The California Healthcare Foundation noticed the trend of patients connecting online in a 2008 paper The Wisdom of Patients: Health Care Meets Online Social Media.  The article provides a good background of the changing landscape of both patient and physician social media.

In March 2009, Bunny Ellerin of InterbrandHealth (a leading brand consultant) wrote Six Ways Pharma Marketers Can Use Social Media (first published in Pharmaceutical Executive, March 2009) with six sensible recommendations that are equally applicable to medical device companies.

Many of the issues faced by medical device companies are faced by businesses more generally. The Harvard Business Review (HBR) published a good article (excerpt fulltext) about successful business interaction with consumer social media in 2009.

Deloitte published a great white paper last year (2010) with up-to-date insights specific to life sciences companies: To friend or not? New insights about social networks in the life sciences industry This paper is full of helpful and practical advice, and also covers physician-centered social networks. Check it out.

Thinking about the future, Susannah Fox of the Pew Research Center blogged about the radical changes to healthcare that might one day be enabled by social networks for patients, Patient Communities… at Walgreens?

Social Media Recommendations for Medical Device Companies:

Appoint a Social Media Leader. Assign social media responsibility to one person on the senior management team. Usually this would be your marketing VP but it could be anyone with some tech-savvy. This person is ultimately responsible for defining and implementing the company’s social media plan.

Define Your Landscape. Identify social media relevant to your business today, and update your list at least quarterly. Include FacebookTwitter, GetSatisfaction and broadly defined patient-centered social media, including forums, Yahoo groups and Google groups. Don’t forget to search blogs too.

Measure Your Social Media Performance. Develop monthly or quarterly reports of product/company mentions, including frequency of mentions, favorability (use TripAdvisor’s system: 5 stars for very good , 3 for acceptable/neutral, 1 for poor), and share of product mentions (vs. competition).

Start a Corporate Blog. Put it on your corporate website and update it at least weekly. Tech and consumer companies embraced blogs long ago (see lists here, here and here).  Humanize your company image. Provide interesting information for other bloggers to reference. Reference other bloggers too. Blog topics might include more insight into relevant news, more insight into company plans, insight into disease states and unmet medical needs, and insight into relevant corporate current events e.g. meetings we attend, etc. Remember, corporate blog audiences include potential patients, physicians, administrators, the general public, employees, stockholders and regulators.  Establish a standard process to review blog drafts before they go live.

Enable Sharing On Your Corporate Website. If I can put buttons on my blog to share a page via email, Facebook or Twitter, so can your website team.

Sponsor or Advertise on Selected Patient-Centered Social Networks. Sponsorship buys goodwill in addition to patient awareness. These may be some of the most targeted promotional opportunities available. Use them, but be selective. Not all social networks are up-to-snuff. Last month, a group of researchers from Children’s Hospital of Boston published an article in the Journal of the American Medical Informatics Association,
showing that the reliability of information on 10 diabetes social networks varied highly among the networks, and that only 50 percent of the sites presented content which was “aligned with diabetes science/clinical practice recommendations.”

Assign Company Social Media Reps. Assign specific employees to participate as company representatives on patient-centric social networks. While a product manager might be an obvious choice, a knowledgeable clinical/regulatory team member or someone from clinical education might be more credible.

Respond carefully. Your company representatives should respond to relevant questions, and confirm or deny rumors with regulatory-compliant fact-based responses. Avoid even the appearance of off-label promotions.  Balance discussions of benefits with discussions of risks.  The HBR article above suggests performing triage and engaging selectively – you don’t have to respond to every issue, but you don’t want issues to spiral out of control.  Be open, build trust, and acknowledge mistakes.

Disseminate News Appropriately. Blog at least weekly, tweet as much as you like, and update your company Facebook page like a high-schooler. Everywhere else online, show a little more restraint. If acceptable to a patient-centered social network, disseminate company news, but be open about being a company representative. If company can have a page in the social network, start and maintain it.

Establish Relationships with ‘Patient Opinion Leaders.’ This recommendation comes from Interbrand, who writes that new social media “has led to the rise of a new type of expert: the Patient Opinion Leader. These are non-medical professionals who inspire trust and act as guides for other patients. They write blogs, voice their opinions in patient communities, post videos on YouTube, and create FaceBook pages devoted to their cause.” Identify relevant Patient Opinion Leaders and ask how you can help them, e.g. with access to information about your products and company, as well as access to physician thought leaders. On your corporate blog, consider writing about the good things that Patient Opinion Leaders are doing. Consider inviting them to provide feedback on products and services to your internal product team. Consider sharing product release news with them just before launch, and quoting them in your press releases.

Train Your Whole Company. One rogue employee online can easily damage a company’s reputation or cause regulatory headaches. Create a corporate policy for employee behavior online, covering all employees. Make sure employees recognize that because they are employees of the company, others will assume that their speech represents the company view.   Appoint someone for to help employees when they have a question about posting online.  Make sure this person responds in real time aka internet speed.

Share Internally. The HBR article recommends that in addition to being the voice of the company to external audiences, your social media representatives should share the voice of the social media inside the company. In larger companies, publish findings in the company newsletter. In smaller firms, share at company meetings. Your employees are social media users – solicit their ideas for improving company interaction with patient-centered media.

Get Patient Input. Deloitte suggests using social networks to perform consumer market research.  Some patient-centric websites will let you run surveys.  Take advantage.

Turbocharge Clinical Trials. Deloitte suggests investigating clinical trial feasibility / enrollment rates by going directly to patients, recruiting patients for trials by direct contact or advertising on social networks, and performing post-market clinical, economic and outcomes research (e.g. in concert with PatientsLikeMe). Check out the Deloitte paper for examples of each of these. Make sure your regulatory team oversees these activities, as they are fraught with conflict-of-interest, patient privacy and other issues.

Integrate Social Media Into Annual Plans. Simply asking, “how can we use social media to expedite our business plan for the next year?” can open new lines of thinking upstream in product development and downstream in product promotion.

Benefits, Challenges, and Issues of Social Networks for Patients

Patient-centered social networks enable faster dissemination of new product information to the patient community (“Can anyone tell me about the new 3-D Mammography?”), the possibility of patient-demand driving physician adoption (“Doc, can you use the robot for my procedure?”), patient-to-patient user support (“Here’s a trick I use to …”), real-life feedback of patient experiences (“Welcome to my blog – a story of my ___ implant”), and novel insight and market research into the patient population and condition (“the top new features requested by patients are ___”). Patient-centered social networks can help medical device companies counteract rumors and accelerate clinical trials. But these benefits don’t come without costs. Companies must commit resources to actively participate in online communities, maintain regulatory compliance at all times, and manage employee behavior across the organization.

Online patient communities can also present challenges: faster dissemination of incorrect product information or competitive product information to patients, uncontrolled discussion of off-label uses of your devices, the possibility of patient dissatisfaction driving down physician demand, misinformed patient-to-patient counseling resulting in dissatisfaction and adverse outcomes, stories of rare but dramatically rendered adverse events scaring patients, or skewed or biased market research conclusions drawn from vocal but non-representative patient subsets.  Medical device companies ignore these issues at their own peril.

Participate. Be honest and direct. Abide regulations. I’d love to hear how patient-centered social media is working for you.


4 thoughts on “The Patient Graph

  1. Jay,

    I really enjoyed this one. Had not thought about this aspect of social networking. Indeed it is important. BTW, I’ve never tweeted yet.


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