This post continues our week-long theme of government regulation with a discussion on why it’s important for consumers to engage with with Pharma companies.
By Russ Ward (@russcward)
Every one of us has done it at least once.
You come down with some sickness, tally up the symptoms of your malady, and hit the internet. Ten minutes later, you’re so preoccupied learning about the dire possibilities of your diagnosis that you barely even feel poorly anymore. You’re convinced you’re at death’s door.
Doctor Google is in, and he’s writing out prescriptions for fear-mongering.
Some argue that pharma companies’ DTC communications are inappropriate and should be curbed, curtailed, or cut off altogether. But without giving the manufacturer a voice, where do patients get their information?
Peer conversations can sometimes be supportive, informative, and sympathetic. Left entirely unregulated, however, they can devolve into a morass of gossip, rumors, dirty jokes and sniping. For evidence, see everyone’s favorite anonymous message boards on Cafe Pharma.
On the other hand, look at Wikipedia or Snopes, places where truth will out. They have the mechanisms in place to enable what we can call “the corrective collective” – gathering, appreciating, sharing and discussing factual information.
Other patients can be a source of the best understanding a patient can find. Finding people who know what you’re going through, or can spot a problem that they’ve lived through and tell you how to handle it, can be immensely relieving, incredibly encouraging – and even life-saving.
Unfortunately, unregulated information from unknown individuals can also be misleading or downright wrong, deliberately or accidentally.
Bad research on the part of a frightened patient – research that has gathered inaccurate information – can lead to bad decisions that may not be in the best interests of their own health. In a recent (great) upload by Jonathan Richman onto SlideShare, he quotes from a Pew Internet study that found that “three-quarters of health seekers do not consistently check the source and date of the health information they find online.” So what are they reading? Outdated or erroneous information, far too often.
If you work in pharma, you have become used to being pulled aside at family gatherings and becoming the confidante of your relatives – their illnesses, their medications, their dosages. And you’ve also become the recipient of the “facts” they’ve discovered. There is an amazing amount etiquette involved in explaining why “but I got it in a forward” proves nothing, without making anyone feel dumb.
Richman’s brief presentation is a great synopsis of the reasons why pharma involvement is of such great importance, and how it can be done simply. We need to be involved because of the rigor of our industry. We will not (and, anyway, cannot) give patients misleading information. We are under severe regulations. Yes, you know that as a for-profit company, there is a sales motivation. But far better to get accurate facts and a clear interest disclosure, rather than anonymous postings without any background or proof.
And far better for the industry, as well. The more that we can prove our worth and our utility directly to our patients, the better.