Why 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.