Patients’ increased sharing of clinical trial experiences through social media can help sponsors improve outcomes, enrollment
Social media continues to play a major role in clinical trial patient recruitment and participation, according to former trial patients who still share information about their experiences with friends and others online—conversations that can influence whether prospective patients join a trial.
That’s one of the findings of a new survey from CRO WCCT Global, working with Genentech. The nationwide survey of 1,165 patients who participated in a clinical trial in the past three years also sought to learn what patients are saying about trials in order to improve outcomes and enrollment efforts.
Respondents—who were asked how they used social media to find information about trials before they enrolled and how likely they are to share their experiences online—also suggested sponsors direct patients to specific social sites managed by those recruiting and enrolling for a trial.
“Our goal was to do an analysis of how patients who were in clinical trials view social media, not only as a tool but as a way for voicing opinions about trials, including discussing their current involvement and what they thought about trials after their participation,” said Matt Miller, associate director of marketing for WCCT Global. “We also asked them how they were using different social media sites, including blogs, and whom they spoke to online.”
The survey found social media usage for health information is growing rapidly for patients over age 30. The majority of respondents were between ages 18 and 74 and had participated in trials across multiple therapeutic areas. By age, 43% were ages 31 to 50, 29% were between ages 18 and 30 and 21% were ages 51 to 64. Seniors, 65 to 74 years old, made up just over 7% of the total. The report did not break out respondents by gender or by specific therapeutic indications.
The reason behind conducting the survey, in part, was the fact that many sponsors choose not to allow the use of social media for patient recruitment because of the possibility patients might share confidential trial information online while the trial is ongoing.
Among the survey’s findings:
- 51% said they were very likely to share their clinical trial experience online, and 35% said they were somewhat likely to talk about it. Just over 14% said they were not likely to discuss their experiences.
- Leading social media outlets—Facebook, Instagram, Pinterest, Twitter and Snapchat— were cited by 38% of respondents as where they most likely would share their clinical trial experiences online. Nearly 29% preferred review sites such as Yelp and Google Places, and almost 7% chose blogging. More than 28% said they would use all of these outlets to share trial information.
- More than 76% said they would share their clinical trial experiences online with people they don’t know to inform them about the trial, versus 24% who said they would not.
- When asked why respondents would share information about their participation in a trial, nearly 20% said it was to share their good experiences, while less than 1½% said it was to share their bad experiences. Nearly 36% said it was to educate others about clinical trials. And overall, nearly 43% said it was for all of those reasons—to share the good and the bad, as well as to help educate others about trials.
“We found online patients often have more trust in other online patients than in their own doctors, because they can relate to another patient’s experience,” said Miller.
The survey’s conclusion: social media should not be ignored in patient recruitment efforts and could play a role in changing public perception about clinical trials in a positive way. Both CROs and sponsors could learn from what patients are saying to improve trial outcomes and enrollment efforts.
“There are not many guidelines, so IRBs are urging sponsors to take steps about becoming aware and more open about social media— even adding language to Informed Consent Forms to educate prospective trial participants about speaking out and sharing information,” said Lindsay McNair, M.D., WIRB-Copernicus Group’s chief medical officer and president, consulting services.
Some in the industry, she said, are trying to raise legitimate questions about how to balance participants’ freedom to use social media health forums with the need to maintain the integrity of clinical research studies. One way is to request participants restrict such discussion of ongoing trials. Another, as WCCT suggested, is for sponsors to direct patients to specific social media sites monitored by trial managers.
“It’s a topic that has been discussed, but no one has taken any action,” said McNair.
One of her major concerns is the spread of misinformation from within ongoing trials and, once a trial is completed, in the open sharing of data online.
“Some people will use pseudonyms to post information online about a trial, and you really have no way of knowing if they really are study participants. And there are people who are self-identified as participating in a trial who may be hesitant to report adverse events for fear that they will have to leave the study,” said McNair. “But I am still optimistic that with expansive education, we can moderate the effects of some of these issues over the use of social media.”
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