E-patients’ moments-of-truth are social

Written by Silja on 2 August 2010 in epatients, Online community, Patient-focus - 21 Comments
Trish Attorey - Epatient wall painting

ba“I cannot check you in, but that is not BA’s problem.” This was the infuriating answer I got from a flight attendant with the captivating charm of the Wandsworth prison gate. All I needed was access to the internet to fix a bug in the new online US visa application system.  It was 6 am, I was her ONLY customer, and there was no Internet available at the ENTIRE Basel airport (Yes, Mam, I did go outside, downstairs, upstairs, tried the French side of the airport and the 3G on my iphone, which by the way is not compatible with your crappy website.).  Still my new friend, the British Airways associate, refused to help me out by pulling up the site on her computer. Unimpressed by the speaker announcement that my flight was about to embark, she stared me dead in the eyes instead and said: “I cannot help you with that, it is against our policy!”.

I am sure that all of you had these travel moments when your life tips from cruise mode into a survival-of-the-fittest exercise. In customer service jargon, they are called “moments of truth”. They are the instances of contact you forge a lasting impression about a company or product. In airline travel, we encounter many of these moments: when we book our tickets, call to make a change, check-in, get to the gate, pick up our bags etc. Yet it is only the moments when things go really wrong, eg. when our bags do not show up as expected, that we start to truly care about customer service. It is these moments that decide whether you will build deep loyalty or profound despise for a brand.

Well, BA and I were having such a moment. After I had exhausted my entire repertoire of legendary persistence, resourceful persuasiveness and European language skills, I was convinced: I was a guinea pig in a secret BA trial to determine just how many absurd guidelines it could conceive…and I nominated my favorite BA jailer for the employee-of-the-year award: she did not budge an inch! Customer service at its worst. (Read till the end to learn whether I manged to embark :-) .)

Now that I am back in the fully-wifi-enable world again, I came across this amazing post by Trisha Torrey and moving mural (see below) by Regina Holliday depicting e-patients and the books they wrote about their experiences with the US health care system or better about those moments in which it broke down. Each one of them had to fight the system that was supposed to take care of them. For them there was much more at stake than simply missing a flight though, it was more like missing the boat on LIFE!


The odyssey by e-patient Dave, especially intrigued me, because it got me thinking about pharma’s  opportunities to manage patients’ moments of truth around clinical trials. Dave was diagnosed with metastatic kidney cancer and a median survival time of 24 weeks. He survived solely because of his courageus attitude and his determination to participate in his treatment decisions. Finally though his cure came in form of a Proleukin clinical trial.

What awes me in his inspiring story is this: Pharma companies, especially in cancer, are desperately competing with one another to enroll eligible patients in their trials in order to bring innovative medicines to market as quickly and efficiently as possible. If clinical trials are a crucial part of a pharma company’s success, it appears as though they are also one of pharma’s best kept secrets.

Dave surely would not have heard about his clinical trial, if he hadn’t been at one of the participating hospitals. Smart social media engagement could enable pharma to make patients aware of clinical trials when and where they are looking for them. Many innovative social media platforms exist to facilitate the search for clinical trials via social media. Trial X for example matches trials to your condition, gender, age and condition…and even lets you tweet your request!

Pharma needs patients in their clinical trials to bring safe, new medicines to market quickly. Patients need safe, new medicines quickly to survive. Clinical trials should thus be THE opportunity to collaborate for a cure. Yet often, they are perceived by patients as yet another opportunity to turn them into guinea pigs. Pharma has to make clinical trial participation its problem and crusade. The Anderson center has done so very impressively using social media at its best: KOL videos explain patients how clinical trials work and are skillfully supported with a facebook page, twitter account as well as  detailed information about every trial ongoing in the center.

Finally, as I pointed out in this post for Amy Tenderich‘s diabetesmine, I believe that pharma should look towards social media to involve patients along all stages of its trial, ready to gather and adapt the clinical protocol to volunteers’ feedback. Sort of a soft version of co-creation. Many great social media communities exist, like patientslikeme or Inspire, that could host your own trial community and mine the data patients provide you with. Find the one that your patient community is most comfortable with and collaborate!

My recommendations to pharma:

  1. Know what is being said about your clinical trial online. Know what patients find when they for clinical trials in their disease: You would be amazed what they find or rather NOT find about your clinical trial online!
  2. Convince patients of the value of your clinical trial: Why is this trial an important advancement for patients?
  3. Make sure all information you CAN communication about your trial is always up to date on the main clinical trials databases and patient sites. Give frequent status updates.
  4. Most of your clinical trial centers are not like MD Anderson. Help them get there! Teach and enable them to use social media efficiently to interact with patients in clinical trials.
  5. Manage rejections! Yup, you read this one correctly. Try to fill in a clinical trial screening questionnaire for a stage 4 cancer on a pharma site and purposefully do not meet the inclusion criteria. You will get a cold standard message like: “Thanks, but you do not fit the criteria. We keep you on file.” Just imagine for a second how the stage 4 cancer patient that had set his or her hopes on this trial will feel reading this message! This is like my BA associate telling me I won’t get on the flight, but it is not her problem. The screening process is a critical moment of truth for clinical trials. Social media can enable interactions with the patient during the screening and help us HUMANIZE this important process.

These are just some moments in which social media can become a critical component to improve pharma’s patient services around clinical trials. Each one of the e-patient testimonies in the mural above (check out Regina’s complete list of their books here) teaches us where and how health care broke down. Each one of them merits to be studied in order to extract the moments-of-truth we could address with the help of social media.

Now, if you continued to read this post for so long, you must really want to know whether I made my flight in the end. And the answer is: Yes! I did embark and was able to enjoy a much needed and fantastic vacation in NYC…and BA had nothing to do with it! I explained my predicament to the nice EasyJet employee across the hall, who immediately let me access his terminal and solve the issue. For some reason, he considered my entire travel experience whether it was with his company or not HIS PROBLEM.

From now on call me e-traveler Silja: empowered, engaged, equipped, enabled and EasyJet-loving! :-)

21 Comments on "E-patients’ moments-of-truth are social"

  1. Andrew Spong 3 August 2010 at 11 h 32 min ·

    A beautifully woven story, Silja, and I love the e-patient tribute sign-off :D


  2. Denise Silber 3 August 2010 at 11 h 50 min ·

    Silja is a wonderful writer. We know that! I enjoyed this to the end. The demonstration of how one person made the difference is a key to life.

  3. Yael Bretscher 3 August 2010 at 11 h 53 min ·

    another gem from the airline-complaints-Social media world, already a classic, but still good :-)

  4. Sally 3 August 2010 at 13 h 22 min ·

    Awesome post, Silja.

    So sorry to hear about your experiences with BA, they sadly seem oddly reminiscent of mine with other airlines. It’s as though they hire the meanest toughest dragons to keep customers from getting anywhere sometimes ;)

    I love your advice to Pharma companies, particularly the part about handling rejections from clinical trials. Recently, I filled in a form for a friend to see if they were eligible and was unprepared for the stark and unhelpful ‘thank you but no thanks’ we got at the end after 30 mins of painstakingly considered answers. Of course, she burst into tears and I was left feeling sad for her and quite angry at the coldness of it all.

    This is a surprising finding from an industry that spends a lot of money training sales reps to handle physician objections and rejections but appears not to have some basic humanity and dignity in dealing with people on the other end of the spectrum ie patients and caregivers.

  5. Angela Dunn 3 August 2010 at 13 h 44 min ·

    Fantastic post! Thank you for sharing this critical message in such an eloquent way, Silja! Social media tools provide an incredible channel for patients and access to information. My personal experience was finding a new treatment for my son through Twitter, Mayo Clinic, and Dr. Berger.

    What is the difference between “patient experience” and “customer experience”? Can the principles of “Delivering Happiness” be applied to pharma and healthcare? Did you see Ellen Hoenig’s great post, “Pharma Marketers: Eight Things We Might Learn from Zappos.com” http://bit.ly/9pMgF3. I will also blog more about this topic this week and look forward to continuing this important conversation!

    Angela Dunn
    Odom Lewis

  6. Andrew Spong 3 August 2010 at 14 h 22 min ·

    @Sally – that’s a powerful anecdote, and a reminder for pharma that it needs to apply social-oriented reforms to the drug development process, too.

  7. Angel Gonzalez 3 August 2010 at 17 h 00 min ·

    Hey Silja,

    Great post, thanks for sharing with us both your personal experience in travelling and your thoughts on “moment of the truth” in Healthcare.

    Very creative way to open your post and once captured the attention with that BA (that reminded me to http://youtu.be/5YGc4zOqozo) develop the nitty gritty related to how to take advantage of Social Media in clinical trials.

    You are absolutely right my friend: promises have to be sustainable during the whole process, even when a brand, institution or service has to deal with embarrasing, uncomfortable and “out of protocol” situations.

    There is a big gap between Pharma´s and patients, a big emotional gap. And this is paradoxical, because they need each other and are linked by a very relevant issue: life.

    I think Social Media can help to fill that gap (not easy), to humanize medicine, and to redrive Pharma´s to struggle to find their “True North” by managing properly of the moments of truth.

    I wonder if BA was finally took over by Iberia…SOS!



  8. Silja 3 August 2010 at 17 h 05 min ·

    Thanks, Angel! LOVE the song! Fantastic!

  9. Silja 3 August 2010 at 17 h 08 min ·

    Sally, thank you so much for sharing this story. And all my best to your friend.

    I also agree on the money spent on rejection handling. It seems that a lot of times marketers think that just because an interaction is virtual vs. face-to-face it is deprived of emotions.

  10. Silja 3 August 2010 at 17 h 09 min ·

    Thanks Andrew and Denise for the compliments on my writing….Denise, I have to confess though that I am not too proud of some French expressions that escaped me during this whole experience ;-)

  11. e-Patient Dave 4 August 2010 at 4 h 55 min ·


    Here I am, many hours later, I finally dug down to the morning’s mails. This is what I get for staying up till 4 a.m. in Boston, writing blog posts!

    To thank you for this lovely multi-level story, I’ll give you something nobody else has seen, except book owners:

    My oncologist at Beth Israel Deaconess, Dr. David McDermott, made a special request – he asked that I include this appeal in the front of the book:

    An Appeal

    Kidney cancer needs to have
    more treatments developed.
    I encourage patients to inquire
    about being in a clinical trial, as I was:
    it’s only through research
    that we can make progress against this disease.

    Trials may or may not be available
    at your local cancer center,
    but you may feel it’s worth traveling
    to explore your options.
    I would have, if necessary.

    Thank you!

    And indeed I would: before I knew IL-2 was available there, I was already thinking “If I have to go to MD Anderson in Houston, I will. What am I gonna do, sit home and die, wishing I had a plane ticket?”

    It may take some time, but as patients realize what a role they can play in improving treatments, I think more of us will dive in.

  12. BaltimoreDoc 3 September 2010 at 17 h 10 min ·

    “Dave was diagnosed with metastatic kidney cancer and a median survival time of 24 weeks. He survived solely because of his courageus attitude and his determination to participate in his treatment decisions. ”

    Actually Dave did a google search and totally misunderstood the research data on his cancer and although serious it had a much longer survival rate and the treatment his doc recommended from the beginning has very good outcomes (when interlukin works it is about 95% effective) .

    Dave, had a Harvard doc who quickly diagnosed him correctly, connected him to the online cancer support community and corrected Dave’s misinformation. He got the exact treatment his doctor recommended and he is alive because he went to a world class medical institution not because he was empowered.

    In fact in his book he repeatedly didn’t follow their directions and in one case had to have a second surgery as he broke the screws in a broken bone.

    We all have patients who show up in our office with reams of internet searches and want to be in charge of their care. Thankfully in Dave’s case he listened to his doctor and got the recommended care. His story is actually used by many docs now as a warning to other patients about not searching online first.

  13. e-Patient Dave 3 September 2010 at 20 h 12 min ·


    Wow, we need to straighten some things out.

    What do you mean that I totally misunderstood the research data I found? I’ve said some things in my speeches that might be interpreted that way, but for the most part what I found online was simply wrong – out of date.

    I’ve never seen the “95% effective” that you cite – please explain what you mean by “effective.”

    I agree that I’m alive because I got great treatment. OTOH, as the prolog explains, I was at that institution as a result of decades of personal choices to be responsible for where I was getting care.

    I wouldn’t want anyone to think they can get cancer (or drive their car off a cliff) and then push the Empowered button and beat anything.

    Please steer me to the docs who are using me as a reason NOT to google! They’re misquoting me, and I’d like to reach a mutual point of view. Wow.

  14. bev M.D. 3 September 2010 at 21 h 23 min ·

    Baltimore doc;

    Dave has to be diplomatic, but I can say it – you are SERIOUSLY screwed up, both as to your facts and your attitude. It is docs like you that make patients angry. I’m sure some patients walk in to your office and annoy you with misinterpreted internet data,but Dave is most assuredly not one of them.

    It’s time for you and your brethren to grow up. You are treating patients, not dogs.

  15. Paul Levy 3 September 2010 at 22 h 10 min ·

    Dear Baltimore Doc,

    I see that Dave has already responded to you in his way, but I will ask another way. How can you ethically draw conclusions about his patient experience from afar in the way you have? You don’t have access to his patient data, and you certainly could not have talked with his doctors about his case? This is not like watching an episode of ER on TV and finding technical flaws in their presentation. This is a very complicated patient experience.

    Beyond the ethical issues of commenting on someone else’s patient, why — on a personal level — would you choose to disparage him in the way you have?

  16. Daphne Swancutt 3 September 2010 at 23 h 26 min ·


    BaltimoreDoc: I’m ashamed to say I live in the same Charm City. Please let me know who you are so I’m certain to steer clear–and steer others away–from your judgmental, narrow-minded practice.

    Not much more I can say than what BevMD and Paul Levy already have, other than the reason patients show up in physician offices with “reams of internet searches” is that many providers out there aren’t doing their own due diligence (for whatever reasons). It’s your job to help folks through the reams, and advise, counsel and treat them. Not make them feel like idiots for wanting to get answers.

  17. Regina Holliday 4 September 2010 at 12 h 52 min ·

    Wow, I have rarely read a post where the original post and comment field are as equally engaging. You did an amazing job, Silja. Great analysis and your flight wraparound was superb. Thanks for the mention and link of the piece “Give Us Our Dammed Data” and the link to my profile. It is good to know even more people will see and read about all of these e-patients.

    And Baltimore Doc, you really messed with the wrong e-patient. Dave DeBronkart is a stickler for the little details (like telling the truth) in comments and articles. Even though your comments made very concerned and a little angry, I am so glad you posted as we need to address such misinformation.

  18. Gilles Frydman 4 September 2010 at 13 h 41 min ·

    “We all have patients who show up in our office with reams of internet searches and want to be in charge of their care. ”

    BaltimoreDoc, you just sound like all the dinosaur docs who still believe they can order treatments on patients without having an informed conversation with the people they treat. Equating patient activation and engagement with “reams of paper” is dishonest at best. Engaged patients do bring limited and precise questions and supporting evidence to their physicians. And in many cases they understand far more science that you obviously give them credit.

    I believe patients should run away as fast as possible from patronizing and paternalistic doctors, who believe in 2010 that they may know more than groups of 1,000 savvy patients suffering from a common disease.

    You answered Dave like someone who is acutely aware of the treatments choices for Renal Cell Carcinoma. What is your background and how do you have the expertise that allows you to answer Dave with authority?

  19. Dale Ann Micalizzi 4 September 2010 at 16 h 18 min ·

    This discussion is interesting and one that needs to be addressed. How are advocates or empowered patients seen by healthcare providers? How are we really seen by some? Are we both listening and how can we fix it? There are many BaltimoreDocs out there.

    Over the past nine years, I’ve presented at multiple healthcare conferences. Following my talk, I’m often given the anonymous evaluation results of my presentation. There are usually 95% wonderfully written acknowledgments of gratitude but the other 5% try to destroy me in one way or another to the point of cruelty. Since names are not required on these evaluations, some have no problem, persecuting me for having the nerve to say that healthcare is NOT perfect and that we can do better as a team.

    You think to yourself, they have not experienced our situation so how could they possibly know what happened or how we should or should not feel or think. It’s almost like some think of us as the enemy instead of the people who are trying to save their family from harm.

    You try and focus on the 95% who get it but you give more energy to the 5% that you just don’t understand their logic or thinking. Is it fear on their part or do they think of us as critics of their personal work? Or, are some people just mean? I wonder if they are giving us that much energy to understand why we do what we do…we are all in this together and perhaps those 5% will need us one day, really need us.

    We can help healthcare improve because we have seen the dark side and it’s not pretty. We have learned to speak up through tragedy and I know that we are all quite specific of truthful details of the event. Let’s build each other up instead of knocking us down. We wouldn’t be doing this if there wasn’t a need.

  20. Gwen van Solingen 4 September 2010 at 17 h 19 min ·

    One comment for BaltimoreDoc, get off your pedestal. It is exactly because of this stance regarding patients and the internet that patients have come to the point that they have to ‘empower’ themselves. Silja, thank you for stirring this conversation up. Enjoy the weekend, Gwen

Trackbacks for this post

  1. Tweets that mention E-patients’ moments-of-truth are social - whydot pharma -- Topsy.com

Leave a Comment