Patients are involved in many parts of research – from the design, to the trials, to contributing data, to helping to define directions for improving patient care and quality of life. The desire is that patient needs are part of the decision-making at every part of the health care experience.
Similarly in clinical trials, giving supporters a way to show their involvement may create a greater sense of community and potentially lead to higher patient enrollment than expected.
I showed this yesterday. Look closely at this wheel – Prism, actually. I especially like the concept of this as a prism. Look at how each of layers interacts and changes with a twist of the perspective. It really demonstrates our interconnectedness, and especially how interconnected we are to the technologies we are using. Now, I challenge you to find at least one service/tool in each one of these categories with which you are familiar. You have some idea what it does and what its purpose is, even if you haven’t personally used it or have an account to use it. Why do I think this is important? I think it is important for you to know where you are connecting to others and for what purpose. Each of these tools exists for a reason – to fill a gap or fulfill a need that has been defined for and by a community of people to help them do something. As you move from the outside to the inside of this circle, you get a better idea what gap is being filled, until you finally reach the innermost parts of the circle. Here you understand that the outside is revolving around some very fundamental, core ideas with which we are all familiar! Vision, Purpose, Value, Commitment, Transparency. And powering this wheel are 3 key factors: Listening Learning Adapting. Our use of social media is constantly evolving as we listen, learn and adapt to our changing needs. It’s a dynamic movement with technology influencing us, and us influencing technology. So I assert that if we can grasp how a few of these tools are being used to meet our vision, purpose, and value, we can have a better understanding of how patient engagement with social media works. So let’s talk more about this idea. What are we trying to do as we work with clinical trial participants, and how does social media promise to help us engage participants for better outcomes (or what else would we want to get from more participant engagement??)
Add with other recruitment marketing and it could help to accelerate enrollment and reduce the overall cost per randomized patient
For example, targeted ads in Facebook. Targeted ads on Facebook is NOT engagement – just targeted ads that should be effective in finding your defined audience.Social use of a Facebook page builds a community where users can learn.Concerns:Lack of control over messagingFalse reporting of adverse events or safety concernsCompromise trial participants’ confidentiality and privacy rights?
Interactive engagement – education and services are better understood. Use your Facebook and social media accounts to help educate the public. Your accounts should be used to talk about the clinical research, but also help people understand research. They will find you as part of their community – if you offer something of value.
Once listening and engaging is performed, it becomes easy to do the rest: to add value, to advertise/promote/shape demand and to create a community.First, while all are essential to gain value from social media, listening is, possibly, most critical for life sciences companies, and it is also the least risky. These days, consumers often purchase based on social media influencers. Additionally, there are Twitter profiles, such as @SideEffectsSpy and @eyeonfda, which serve as unregulated pharma watchdogs, while community sites like www.patientslikeme.com and www.doseofdigital.com continuously share views about pharmaceutical products before companies have time to react. Keeping an eye on your company’s mentions allows you to respond in a timely and appropriate manner. Life sciences companies can find out exactly what the concerns of patient advocate groups are so that this can then be incorporated into further patient engagement. Whatever your company’s involvement, proactively listening should be part of your social media strategy. Read blogs, follow relevant Twitter profiles, and check Facebook. Consumers, associations, and the media are talking – do you know what they are saying about you? More important, do you know what their sentiment is overall? Is it positive? Negative?
Extend reach by working off existing marketing – use social media where it makes sense.
Consumers are interacting with each other, but what about companies? Some pharma companies seem to be interacting more frequently, and not just watching from the sidelines. Companies like Novo Nordisk, the first pharma company to create a product promotional campaign via Twitter; Johnson and Johnson, the first pharma to blog and, additionally, launch an online health education channel of videos; and, more recently, AstraZeneca, the first to hold a sponsored pharma Twitter chat, are paving the social media path for pharma companies. Even the FDA is no exception, participating in social media channels such as Twitter and Facebook.
Companies need to establish their initial presence. By building a consistent look and feel, companies can gain awareness and develop their voice.Take time to learn what is currently being discussed in the industry and understand the discussions taking place. Then, participate in a way the community will find relevant. Start discussions, and join ones already in progress. Post pictures, videos, comments, and questions.Become an esteemed contributor by adding value to existing communities. Gain followers virally by becoming friends with others in your industry across multiple channels. Want to add significant and valuable content? Be the expert – blog consistently on topics affecting your company and your industry.Sponsor social media third-party channels. The life sciences industry generates and responds to buzz by sharing stories, which includes heavy blogging, tweeting, and thoughtfully responding to others’ shared stories.Announce new company activities, products/services, and relationships. Constantly innovate, entertain, and be relevant. Monitor your “share of voice” vs. “share of wallet” to achieve long-term positive perception.
SoCRA Harnessing Social Media Workshop 2013 - Patient Engagement
The Promise of
with Social Media
Leslie Hammersmith, MA
Cancer Research Advocate
Senior Learning Technologies Manager and E-Learning Analyst
University of Illinois at Urbana-Champaign
August 2, 2013
SoCRA Harnessing Social Media For Advances in Clinical Research
• 6 year breast cancer survivor
• Senior Manager and eLearning Analyst
in higher education
• Trained cancer research advocate
• Research Advocacy Network
• Young Survival Coalition Research Think Tank
• NBCC Project LEAD Institute
3 Principles For Harnessing Social Media
The Conversation Prism, The Altimeter Group, Brian Solis & JESS3, http://thenextweb.com/wp-content/blogs.dir/1/files/2013/07/TCP4.jpg
Engagement via Social Media
Typical Marketing Breakdown for Clinical Trials
Direct Mail Social Media Print & Broadcast Media
Does this still make sense?
From Institute for Health Technology Transformation, http://ihealthtran.com/wordpress/2013/07/infographic-how-to-engage-patients-online/
A healthy dose of social media
“How this survey was conducted: Mindset Digital
LLC and the Ohio Hospital Association collaborated
on this survey which was conducted through email
with OHA members. We received responses from
officials representing 84 hospitals, which
represents more than half the OHA member
hospitals. No information about individual
hospitals or systems will be released as part of this
Hospitals are devoted to
Relationships are top
Social media is typically a
More dedicated staff.
Facebook Twitter YouTube LinkedIn Blogging Pinterest Google+
Connecting with patients.
Sharing health info.
STRATEGIES FOR CONNECTING
Cliff Mintz, “Social Media’s Impact On Clinical Trial Enrollment
“Significant gains only when the general public’s
understanding about the importance of clinical
research is vastly improved.”
In order to have Participant Engagement,
harness being a ‘Social Business’.
Staff: part-time, consultant
Do: Pilot some stuff
Staff: Dedicated Manager
Do: Start some campaigns for sharing content.
can have the
customers, and set
Critical element of relationship building
Staff: Social Strategist, small dedicated team
Do: Look for more engagement opportunities to introduce value into the community.
The road map to successful
participant engagement with social
media means developing a
strategy, a personality, and investing
time, resources, and value creation
in a social media presence.
1. Build a foundation.
2. Listen and participate.
3. Gain followers by adding value.
4. Generate buzz and provide the community an
opportunity to share authentic stories of people
getting better by participating in clinical trials.
5. Monitor channels.
This presentation on Slideshare at
August 2, 2013
SoCRA Harnessing Social Media For Advances in Clinical Research
Clinical Trials of Texas, Inc. on Pinterest