Be part of your patient community

During the month of March, you may see yellow ribbons promoting Endometriosis Awareness Month or flyers for walks to support Multiple Sclerosis.  Throughout the year, we are familiar with having every month tied to a condition or disease with the goal of raising awareness.  These designated months often find us surrounded by ribbons, events and fundraising efforts to support the various causes.

It is no surprise, then, that sites and sponsors often urge us to take advantage of these awareness events to recruit patients for a clinical trial. Though these designated months and events are positive ways to raise awareness about a health condition, they are not necessarily an ideal opportunity to recruit patients. These events are mainly focused on promoting awareness of the condition and most importantly raising money. While they are all great causes, we have found that using these opportunities to recruit patients rarely is successful.

Instead of focusing on a local event or specific disease awareness month, your time is better spent developing a community outreach and social media plan that focuses on building awareness over time.  Though you may not be inundated with responses from your outreach efforts similar to a typical advertising campaign, social media can be a useful recruitment tactic.  When developing a social media plan, it is imperative to develop a thought out plan that does not focus solely on one event or timeframe.

But where do you start? Disease advocacy has exploded in recent years and it can be difficult to break through the clutter to find the best way to reach your target audience. Following are some simple strategy processes that will get you on the right track.

One of the key components to any campaign is to know your audience. Social media provides an opportunity to listen to your target audience and even be part of their conversation.  In a Rebar Interactive post from 2012, there is a good overview of the different engagement options to consider when entering the world of clinical trial recruitment via social media.

As the Rebar post mentions, the first step in creating a social media campaign is to identify where your patient population is talking about their condition:

• Blogs
• Facebook
• Instagram
• Message Boards
• Twitter
• YouTube

Once you start your search, you will find that many of the blogs and social media pages will lead you to additional sources that patients are following.  Bloggers and Facebook pages often have a list of other online sources they follow.   

It is also beneficial to sign-up to receive email newsletters and updates from the larger online communities so you can stay on top of the current news and conversations.

Once you identify the venues where your patients are talking, become a regular visitor in these spaces. Like their Facebook pages. Follow them on Twitter, and read the blogs on a regular basis.  Reading the discussions will give you a better perspective on the conversations happening in the patient community and will help to craft messaging for social media that will resonate with your target audience. Conversations can move very quickly on some of these forums, so it can be a little overwhelming at first.  You do not have to read every single thread and discussion, but try to continually check-in with your online patient community.

This can be a bit more time consuming then putting together some flyers and a poster at a community event, but it is an essential step in understanding the patient community you are trying to reach.

When developing your plan, there are some questions you should always keep in mind:

• What venues are you going to target?
• What message do you want to convey?
• Does the message need to differ based on your audience?
• How often do you want to reach out?
• Who will be responsible for monitoring the online community?

For a recent clinical trial that had a large online community, we developed an outreach strategy that included a Facebook page, blogger outreach and relationships with other condition-specific websites.

Through our efforts, a few blogs mentioned our study, people shared information about the study on Facebook and Twitter, and we created a few ongoing relationships within the online community.These posts helped spread the word about the study as followers of these online outlets then took the study information and shared it via social media. 

You may not be able to track the results of an online outreach campaign the same way you track an advertising campaign, counting incoming calls and referrals.  But, you can track your online activity and monitor where your website visitors are coming from.  As a result of our social media efforts, we did see an increase in website visitors and continued to see the information shared with additional online communities.

An online community outreach plan often evolves over the course of the study.  You will find new sources, and you may create relationships with some of the contacts that make it necessary to change your strategy or tactics in the middle of the campaign.  You should be prepared to alter your plan based on interest and feedback from the patient community.

Due to the nature of the Internet, patients can easily spread the word about a clinical trial, so it is important for you to develop a plan that targets your patients online.  Though it is tempting to focus your recruitment efforts around a single event, in the end, your time and money are better spent focusing on a comprehensive online outreach strategy spread across many different platforms over a longer period of time. This approach will help you engage your patient audience more effectively and gives you greater flexibility to take advantage of the dynamic medium that is social media.