Heidi Ledford for Nature writes (excerpt):
“As companies increasingly focus on rare diseases and precision medicine tailored to a specific subset of patients, it has become more difficult to find willing volunteers who meet the necessary criteria. Recruitment and retention rates are the worst that they’ve been since the Tufts Center for the Study of Drug Development started tracking them 20 years ago, says Kenneth Getz, who studies clinical trials at the centre in Boston, Massachusetts.
“Industry-wide, everybody recognizes this as a huge problem,” says James Nolan, chief executive at InClinica, a contract-research organization in Wayne, Pennsylvania, that conducts clinical trials. “It’s not going away — it’s going to get much worse.”
The recruiting problem has given potential participants leverage and altered their relationship with clinical researchers: a trial that is too burdensome, or forces many participants into a control group, could be doomed to failure from the start. “Many of the companies understand that we can’t do this now without patients being equal partners,” says Sohini Chowdhury, deputy chief executive of the Michael J. Fox Foundation for Parkinson’s Research in New York City”.
SNIP
“Furlong recognizes that anxiety. “There’s a moment when your son looks at you and says, ‘I don’t think I want to do this. I miss my friends. I don’t want them to stick me another time.’” she says. “As a parent, you are second-guessing: ‘Is this the right thing?’” Often, parents of children with DMD will share information online because they are desperate to hear someone, anyone, tell them that their child is improving, she says..
Researchers are still grappling with how best to handle such online discussions. Inspire, which displays targeted advertisements for clinical trials to some of its 1.5 million members, expressly prohibits discussions that could affect clinical-trial results, such as comparing possible side effects or discussing ways to game eligibility criteria to gain entry to a trial. The site employs moderators to check posts after they go live.
“We had a lot of internal debate about it,” says Loew of the policy. “On the one hand, people should be able to talk about whatever they want. But we decided that you can actually do harm to the science.” Other sites, however, such as Twitter and Facebook, have no such policies.
Some companies running trials have inserted guidance about such communications in the consent forms that study participants sign. But that can backfire and cause undue worry, or limit participants’ ability to find support online, says Lipset. “You can see in online communities where participants are scared that they have just signed a confidentiality agreement and will be thrown in jail for posting.”
Read the entire Heidi Ledford article for Nature by clicking here.