1.6 Million People Accelerate Medical Progress

When Brian Loew founded Inspire in 2005, he never dreamed of its impact on members, on himself and on the people who worked with him. “When someone tells a story about how, by connecting with others, they learned that a certain treatment was possible. And they credit being alive because of that — it makes you realize that this is not just a matter of 1.6 million people — but a matter of a ton of individual lives that are affected by what you created.”1

On April 3, Loew shared this realization, discussed why he started Inspire, and described what differentiates it from other social media sites on the #HCBiz Show with podcast host, Don Lee.

Since the beginning, Inspire has grown to a membership of 1.6 million people living with serious conditions. About one-third of Inspire’s membership live with cancer and 25 percent have rare diseases. “We have about 400,000 people with rare conditions,” Loew said. “And these are spread across 3,100 different rare diseases out of the total of 7,000 that have been identified. In some cases we have 30 – 35% of the US population of people with a particular rare disease.”

Loew described the inspiration behind Inspire this way, “It takes 13 years to bring a drug to market and the slowest point is typically recruitment…medical research is bottle-necked by access to patients. So the idea was, if you could aggregate enough members, organized by disease area, and ask them to raise their hand and volunteer to participate in research, then you could accelerate something.”

Understanding the power behind connecting people with serious medical issues evolved over time. “When we started Inspire, we would hear physicians and researchers say that ‘two patients shouldn’t be talking with each other without a doctor in the room,’” he said. “Today we have patient-focused drug development guidelines from the FDA….there was none of that thirteen years ago. This notion that normal laymen– like you and me– can contribute to the acceleration of medical progress is something which I hope is beginning to sound obvious to people but it certainly was not obvious to people in the past.”

What makes Inspire different

Three significant differentiators separate Inspire from other online social media sites. “When we began Inspire… you had things like Yahoo message boards which, because of the lack of moderation…were really not safe spaces.” Inspire has professional moderators that maintain respectful communication and remove trolls or others who might take advantage of members.

Second, unlike other social media sites, Inspire preserves anonymity. “When you join Inspire you …don’t share your real name, your street address, we don’t want any of that. We don’t need your real name to deliver real value to you or to deliver it to our customers,” Loew said.

Finally, Inspire provides control to members. “Many people join Inspire when they are most vulnerable…We never sell lists of members and we never involve members in research without explicitly asking them, affirmatively,– after they are already a member– whether they would like to share additional information and whether they would want to be part of research.…Information will only be shared if they explicitly say that it will be,” Lowe stated. “We have a privacy policy and terms of use.…That covers us legally, but …a good gut check that we always use is, are we treating people the way we would treat our own family?”

Results

Many of Inspire’s members participate in research. “It is not difficult to find people who want to participate, they know if they participate, it is going to be on their terms and, if they are going to participate, they are going to be taken care of,” Loew said.

Inspire started from a place of authenticity and credibility by partnering with national patient advocacy organizations. “Our first partner was the Children’s Inn at NIH, which is where parents stay when their children are undergoing treatment at the NIH,” Loew stated. Now Inspire has 110 partners, including the American Lung Association, the Ovarian Cancer Research Foundation and WomenHeart, among others.

Patients and caregivers learn about and join Inspire through these patient advocacy partners. But they also arrive through word of mouth and organic searches. After 13 years, members have written over one billion words on Inspire. When they write, members choose whether to write a public post or a private post. About two-thirds of posts are public. “The words that are public serve an enormous amount of good.  There are a number of stories where members join and they say, ‘I’m so glad I found this space. I found it by reading the stories written by those who came before me,’” Loew explained.

Working with Stanford University and Mayo Clinic, among others, Inspire has conducted advanced research by following the hunches of scientists. “Hunches are really powerful. There are times when we’re approached by academic researchers who are bottlenecked by not having access to patients.  They are doing really important work and their budget is small or nonexistent,” Loew stated. In the case of one such collaboration with Stanford University, research identified a dangerous side effect of a cancer medication that Inspire members had described and hidden in their posts but which had never been reported to the FDA.

Lowe explained, “I guess what I’m most proud of is, I feel that we really have accelerated medical research and that we’re prepared to do a whole lot more of that.  I feel we have helped individual people have better lives–nothing feels better than that.”

To hear more of this interview, go to “Building a Social Network for Patients and Caregivers” on THE #HCBIZ SHOW!

To read about the Stanford University research, download our case study, “Pharmacovigilance: Detecting Adverse Drug Reactions In Social Media

See our case study, “Pharmacovigilance: Detecting Adverse Drug Reactions In Social Media”

Download case study

Inspire offers a trusted community to patients and caregivers.  Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice.  In so doing, we support faithful operationalization of patient-centricity.  Take a look at our case studies, eBooks and news outlet coverage.

References:
1 https://www.clinicaltherapeutics.com/article/S0149-2918(17)30998-0/pdf
2 https://corp.inspire.com/resource/fourth-annual-survey/