Pharma companies must become more involved in building patient communities through social media if they want to see a successful trial recruitment process according to Patient Nucleus founder Jamie Blackburn.
Blackburn – whose company provides recruitment services via social networking – said the process of enlisting patients is changing because it is now so easy to communicate with each other over the net.
“Patients’ ability to control their community is growing, both as individuals and as a group,” he said.
“What’s really changing and affecting the industry is that people are now sharing information, and comparing experiences and thoughts through social media, instead of basing all opinions solely on the information given by researchers.”
He said that getting involved in these interactions is the best way to reach participants, especially those who do not seek out information in the classic ways, like through a physician.
“It allows firms to gain info through just the conversations patients are having,” he added.
However, Blackburn said the biz needs to move more quickly to keep-up with the fast-paced development.
“I think the pharmaceutical industry is learning that this world is moving faster, but it is still kind of behind the curb,” he said.
“Most companies have been doing patient recruitment for years, and there is plenty of content and plenty of resources available. What they haven’t been doing is keeping up with the new mediums to deliver that information directly to the individual.”
In a plea to sceptics, he added: “It doesn’t reduce the need for quality, it doesn’t reduce the need for trust or medical legal and regulatory checks, it just increases the need for us to be much more in tune with the customer in this case our patients.
Asking for guidance
Blackburn said that regulators like the FDA are still lagging when it comes to the new communication trend, and urged them to put more solid guidelines in place.
But he predicts it could still be some time before we see any major changes.
“I don’t feel like regulation is going to be changed quickly with the next 18 months. I think we’re going to have to deal with the fact the dynamics are still at play.
He warned that though companies certainly should not avoid social media for fear of regulatory reprise, they should expect changes.
“Patients still want to go and create their own communities,” he said. “You almost have to be an anthropologist to understand the information and how regulators will be involved within patient communities.
“Nevertheless, you should be highly aware of what the FDA is not only going to deliver today in their guidance but is also going to continue to deliver in the coming months and years.”
Quality over quantity?
Though Blackburn recognises the sheer magnitude of social media’s reach – with a growing 840m users on Twitter and Facebook alone – Patient Nucleus’ strategy is to be precise and particular in targeting patients.
“If we’re trying to achieve an increase in patients in southern California we would focus on just those patients,” he said.
“We don’t have to have a huge monster strategy, because of these tools and because of the acceptance of these tools.”
However other firms herald the volume of potential targets on the net as the key driving factor of social networking.
Speaking to Outsourcing-Pharma about its expanded ‘opt-in’ database, Acurian’s Scott Conner said: “it is the sheer numbers we can drive into the enrolment continuum that differentiates us from providers using smaller online communities”.