By Fabio Gratton, Co-founder & CEO, CureClick

Last evening my phone suddenly started beeping with alerts from our company’s Twitter stream, and as I scrolled through I grew increasingly concerned. Members of a certain healthcare community were frustrated by what they felt were “spammy” messages using their hashtag. These tweets included information about a lung cancer clinical trial being shared by our community of CureClick Ambassadors.

I am writing this open letter of apology to the entire #LCSM community, and all the organizations and individuals who were caught in the Twitter firestorm as a result of our initiative to increase clinical trials awareness. No matter how good our intentions, it was a poorly executed campaign.

I’d like to start a constructive conversation with your community and others about best practices for organizations like CureClick to use social media in a positive and respectful way to raise awareness about clinical trials.

CureClick’s Mission

Nearly 95 percent of all clinical trials fail to enroll enough participants on time which makes new therapies and cures take longer to come to market. Those who might make a good fit for a trial may never know about the opportunity unless we explore new ideas for raising awareness.

CureClick is one of those “new ideas”. Instead of using traditional advertising, we empower healthcare influencers — those outspoken people among us who live with the conditions, or are patient advocates — with a crowdsourcing solution harnessing the power of social media. From this idea, our Ambassador program was conceived.

Our platform was developed with the help of our esteemed advisory board. Board members, (all health activists with experience in healthcare, social media, and clinical trials), have helped shaped this new crowdsourcing solution. As a result, CureClick is a platform that teaches Ambassadors about clinical trials, educates them on best practices to share information about research, and provides them with tools to make that sharing easy. And for their passion and effort, our Ambassadors are recognized and rewarded through various incentives.

We provide them with gift certificates, or we make donations to a charity of their choice, for helping to enroll patients in clinical trials. We also promote their blogs, and celebrate their accomplishments as health activists.  Most importantly, we arm them with a real-time dashboard that gives them feedback regarding their efforts. As trials reach 100 percent enrollment, our Ambassadors see that they are making a real difference in people’s lives through social sharing.

Initial successes to bring trials to those that need them most

So far our approach is working. Sharing on Facebook, Twitter, Google+, and other social media channels has resulted in many people learning about — and enrolling in — specific trials. Having generated more than 15,000 posts, 50 articles, and countless heartfelt stories sharing clinical trial experiences (all in under 6 months) we think CureClick is an important tool to raise awareness. It has the power to help advance medical science and develop new life-saving therapies.

Even if we failed to recruit for a single trial, we believe that the collective public voice of our Ambassadors is raising awareness of clinical trials, starting conversations that help remove the fear and stigma associated with participating — something we believe is a critical barrier to enrolling.

We’ve made mistakes, but we’re learning

As with any startup, early success is followed by frenetic growth. And with that growth comes important lessons learned. The faux pas that began yesterday as our weekly “Monday Madness Challenge” quickly spiraled out of control.

With an Ambassador community that has grown from 250 to over 3,000 passionate health activists, not all of them are familiar with the nuances of social media “etiquette.” Combine that with our pre-written content we gave them to facilitate easy sharing, and the result was an inordinate number of repeated tweets to the hashtag #LCSM that inundated and overpowered the flow of conversation in that community.

This week’s “Monday Madness Challenge” incentivized our Ambassadors to increase their trial tweets during a 5-day period. We thought it was a great way to keep the community motivated and engaged, but clearly it had the opposite effect.

There is no other way to say this: The intent was good, the execution was poor, and the apology is as sincere as it can be.

What are we doing to make things better?

Today:

  1. We have removed most hashtags from the pre-written tweets until we have discussed them with the communities currently using them.
  2. We’re reaching out to Ambassadors to explain the etiquette surrounding online sharing, and how/when to use specific hashtags.
  3. Our “Monday Challenge” focus has shifted on quality communication versus frequency and volume.
  4. We have reached out to several leaders in #LCSM to help us figure out how to make things better.

In the next few weeks:

  1. We will enhance our training academy to include more information about best practices in sharing. Until now training has mainly focused on clinical trial education.
  2. We will work closer with all our partners — including #LCSM and similar communities — to ensure that the content and cadence of tweets is appropriate.
  3. We will work directly with communities like #LCSM to discover ways to collaborate to advance medical research via open communication.

We are trying to do a good thing, but clearly there is room for improvement. In hindsight, I am very sorry that we did not proactively involve your community from the start. We will learn from our mistakes and hope you will support us going  forward. We envision CureClick being a powerful and amazing platform for clinical trials awareness.

In order to make that happen, we can’t do it alone. We welcome your feedback in trying to solve the challenges ahead of us. We respect and support your online community — and hope we can do more in the near future to prove that.

Sincerely,

Fabio Gratton
Co-founder & CEO
CureClick