Top 5 Takeaways From Harness the Power of Social Media: Open Dialogue with Patients & Patient Advocacy Groups

Aug 20, 2015

hcsmOn Thursday August 13th, a panel of patient experts joined forces for the final installment in the Harness the Power of Social Media Forum Series: Let’s Talk: Open Dialogue with Patients & Patient Advocacy Groups.

Often a difficult subject to broach due to the laundry list of rules and regulations surrounding industry and patient interaction, the panel offered sound advice for an audience eager to engage with patients on social media.

What were the five biggest takeaways from the Forum? Read on to find out!

1) Commit 100%

Each member of the panel was a big proponent of engaging with patients on social media but with the caveat that you must have the resources in place to maintain an active presence.

“Social media has changed the ways in which we communicate but it has not changed the fundamentals of relationship building.” – Sara Loud, MSEE, MBA, COO, Accelerated Cure Project for Multiple Sclerosis

Social media is a new way to form relationships. Relationships can only be maintained through frequent and valuable communication. If you don’t have the resources to maintain relationships through posting, social listening, and interacting with the patient population, you probably are not ready to commit.

2) Identify Key Patient Influencers & Connectors

Once you have decided you are ready to commit, a great place to start by identifying patients who are active on social media. These influencers have the potential to become your “trusted voice”. Once you gain their trust, they may be willing to engage fellow patients in your work.

Patient connectors have the ability to create “webs” and link your organization with other patients who are active on social media. Sarah Loud shared how pivitol connectors have been for converting patients who visit their website to enrollees in their iConquerMS online community. People referred to the website by patient connectors are shown to have a 60% conversion rate!

As a key patient influencer in the world of Cystic Fibrosis, Oli Raynor, Special Adviser of Research & Patient Involvement at the Cystic Fibrosis Trust, shared that when he was asked to help generate feedback on Comparative Effectiveness Research, he created a Survey Monkey and by simply sharing it on Twitter he received nearly 400 responses!

3) Be Genuine

“I’m a big proponent of having an unbranded presence from a pure education standpoint to be able to enter into patient communities. The reason that is so powerful is that there are countries where you can not directly talk to patients as a company. If you have an unbranded presence, that opens a lot of doors.” – Stephanie Cilibrasi,  Patient Marketing Manager,  OvaScience

Patients easily see through disingenuous efforts to connect. Be authentic in your communication. You truly need to be rooted in what is best for the patient. A powerful way to do this is through creating an unbranded presence on social media. OvaScience has created a platform for patients to connect and learn. It is a valuable resource that does not push any one treatment upon them.

4) Know Your Audience

Are you a global company? Will different cultures interpret your message in completely opposite ways? What are patients saying? What are advocacy groups saying?

It is questions like these that you need to consider when crafting your voice as a company that engages with patients. Take some time to think through these types of questions to ensure you are best serving your patients population.

Still not sure about certain topics? ASK. Pose questions to patients such as “What are the top 5 things you wish you understood about your disease?” Use these responses not only to craft future social media posts and discussions but to inform the type of information included on your website and collateral.

5) Be Prepared

Stephanie Cilibrasi recommends establishing a set of guiding principles and community guidelines surrounding social media. These guidelines will be immensely helpful when something unexpected comes your way.

Also be sure to include Legal and Regulatory in the process. They can help you decipher the appropriate ways to interact on social media.

“From the very start I included legal and regulatory in my conversations as part of my social counsel and as a result they feel very entwined in the process.” – Ilana Robbins, Senior Manager, Digital & Social Media, Biogen

Know that the unexpected is part of the social media package. You can’t always predict how anyone will respond on social media but having a plan in place ahead of time and collaborating with the right teams will help mitigate stressful situations.

Final Thoughts

“The brilliant thing about social media is it changed how we all think about involving patients.” – Oli Raynor

Social media is here to stay and is already transforming the way the biotech industry connects with patients. So jump on board and start brainstorming your social media strategy for patient engagement!

If you are interested in learning more about creating a patient-centered biotech, be sure to attend MassBio’s 2nd Annual Patient Advocacy Summit on October 27th at Google’s Cambridge Headquarters!

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