PharmExec Blog

Patients Want to Talk. Do You?

Jacky LawWhy are companies rushing to the web when traditional engagement with patient groups remains so under-exploited, asks Jacky Law.

It used to be so easy. Patients listened to doctors, doctors listened to pharma and everyone was happy. There was even a time when payers listened to pharma, reimbursing their prices with very few questions asked. Now everyone is asking questions and no-one listens to anyone else.
No-one, that is, except pharma. Branded as the bad guy of healthcare, companies are nonetheless trying to learn the art of dialogue, enlisting medical liaison officers in place of reps, engaging social media experts to navigate the minefields of Facebook and YouTube, and creating whole new departments to become more conversant in health economics and patient reported outcomes.

On Facebook, where it can seem the entire world is engaged in conversation, pharma companies are seriously outcast.

But with every step they take in this new patient-centric world, their handicaps become more apparent. On Facebook, for example, where it can seem the entire world is engaged in conversation, pharma companies are seriously outcast. According to the Dose of Digital website, there are around 50 Facebook pages sponsored by pharma and healthcare companies but the vast majority of these don’t allow comments from the public, thereby scuppering any hope of dialogue before its even started.
Dose of Digital founder Jonathan Richman cites three reasons for pharma companies’ reticence to fully engage:
1. They don’t want people to post adverse events.
2. They don’t want people to post off-label information about their products.
3. They don’t want to deal with negative comments.

All good reasons but a fourth — incurring the FDA’s wrath — is arguably the most potent. This happened when the FDA sent a letter to Novartis on July 29, warning that using Facebook’s share button (ie, allowing dialogue) on its Tasigna page amounted to promotion of the leukemia drug. This should have been expected, because the regulations as they stand simply can’t handle sharing technology, where information about a drug can whizz round the net losing, at countless different junctures, the balance it must maintain in terms of risks and benefits.

Why all the talk about the benefits of social media when real dialogue is impossible until the rules change, if indeed they ever will?
So, why all the talk about the benefits of social media when real dialogue is impossible until the rules change, if indeed they ever will? One reason is the clear evidence that patients are the way forward and that they gather to talk about their conditions in ultra-convenient communities.
Patients are indeed the way forward.

In a recent international survey conducted by the Economist Intelligence Unit, the overwhelming conclusions were that patients are speaking up as never before and changing how healthcare systems work. The respondents, healthcare professionals and people from the life science industries, came from the US, the UK, Germany and India. Specifically, 52% of them said patients expect higher standards of care, 57% said they want more information about their treatment; 49% said they wanted more involvement in relevant decisions about their care; and 49% said they wanted access to the latest treatments.
But patients don’t exist exclusively on the web. Even when they choose to converse in patient communities, they usually do so on sites sponsored by patient groups, where their views and concerns are collated by people who are accessible by email, phone, even, dare I say it, in person.
Pharma could start its forays into meaningful dialogue with patients by engaging with these bodies. But the evidence suggests otherwise. Another international survey, this time conducted by PatientView into patient groups’ views of pharma, found that just 22 percent of the 665 respondent groups maintained routine contact with a pharma company.

Moreover, although many of these groups said they were opposed to working with pharma, many more told the survey they wanted to forge ties with industry but believed they were not sufficiently attractive to companies for them to be interested.
Whatever the reasons for this belief, patients are emerging as strong and natural allies of pharma and not only in terms of access to drugs. Call me old-fashioned, but given the rules effectively banning real dialogue on the web and the growing importance of patients, pharma could do a lot worse than simply picking up the phone and asking patient groups what their members want.

This entry was posted in E-Media, Europe, FDA, Global, Guest Blog, Legal and tagged , , , , , . Bookmark the permalink. Trackbacks are closed, but you can post a comment.

2 Comments

  1. Posted August 18, 2010 at 6:43 am | Permalink

    Thanks for the mention in this article, but I did want to clarify a couple of points.

    First, the three reasons that pharma companies are reluctant to engage in social media are not MY reasons, but rather the reasons I hear from pharma companies. To be sure, I think every one of these is easily overcome or truly a non-issue. Exactly why is a bit out of scope for this comment.

    The forth reason (which didn’t come from me) that you give is a bit overstated in my opinion. It’s regarding the Novartis warning letter over “Facebook sharing.” You said: “This should have been expected, because the regulations as they stand simply can’t handle sharing technology, where information about a drug can whizz round the net losing, at countless different junctures, the balance it must maintain in terms of risks and benefits.”

    To be clear, this is not the issue that the FDA really has a problem with. They don’t expect companies to look for any mention of their product on the Internet and figure out a way to paste fair balance statements to each one. It’s not the company’s responsibility if people take their content, change it, repackage it, and send it around the Internet. The equivalent would be holding them responsible if a patient decided to tear out a single page from a drug brochure and shared it with a friend. Would we hold the company responsible if the removed page now didn’t have all the fair balance?

    The real issue is two-fold. How the content was originally, in context, on the site and, second, that Novartis enabled the sharing of the content. The content in question (meta descriptions) were by themselves not compliant since they didn’t have fair balance. Novartis knowingly enabled the sharing of this content by including a sharing widget (in this case for Facebook) on the site. That means, as far as the FDA is concerned, Novartis is encouraging people to take bits of content that it knows are not compliant and to share them with friends.

    The FDA doesn’t mind sharing. It minds when a company helps people share content it deems to be in violation. Back to the brochure example, if this drug brochure had one page that was perforated and only had the glowing benefits of the product and a big headline on top that read “Tear off and share with a friend,” you can see why this is a problem (thanks to commenter Matthew on my blog for this great analogy). Essentially, the FDA see Novartis as having done the digital equivalent of this. They put a big message that encouraged people to share (the Facebook share widget) and ensured that the “perforated” part included only the positive parts. That’s the issue, not sharing in of itself.

    One caveat: I do NOT think that Novartis was intentionally trying to be misleading or encouraging people to share violative content by having this widget on the page, but this was the result, so in the end, they are responsible and did the right thing by taking the widget away until a better solution could be found.

    More of my view on this issue can be found here: http://bit.ly/9NWf5h

    Jonathan Richman
    Dose of Digital

  2. Posted August 19, 2010 at 8:28 am | Permalink

    Jonathan,

    Great comment. I think it’s important to point out that the “fourth reason” is actually the only reason that Pharma is scared of social media. It is the underlying reason that pharma is worried about AE reporting (because if you’re not in their system quickly you can be in violation) and off-label discussions (mainly on hosted sites where Pharma is expected to control the information). I suppose Pharma is as leery as any other industry about negative comments on its products (Honda Crosstour anyone?) but that isn’t the main issue in my experience.

    The recent Tasigna letter is actually a boon to social media for Pharma because it shows that the FDA does not ban Pharma from the channel, it simply wants the same rules to apply as are used in “traditional” digital media (websites, SEM, DA, etc.).

    Julian,

    I would say that Pharma is right to concentrate on social media for two reasons:

    1. My experience is that the different medical and marketing groups inside the pharma companies are already reaching out to patient groups, and they get welcomed or shunned based on the culture of the group. (YMMV)

    2. Direct communication is great, but if it’s not mediated electronically it vanishes and is much more difficult to share. The best way to leverage conversations efficiently, so that others can benefit, is the new social media technologies. You won’t get every patient through any one channel, but social is now an important channel for the majority of users.

    So, in summary, Pharma can participate in real dialogue, and there is value for e-patients when it does so. It just has to stay inside of the FDA regulations when it does so.

Post a Comment

Your email is never published nor shared. Required fields are marked *

*
*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

  • Categories

  • Meta