The work that epatient Lisa Emrich does in blogging about her experience helps not one, but two separate groups of individuals as she has been diagnosed with both multiple sclerosis (MS) and rheumatoid arthritis (RA). Undaunted, she has been sharing her perspectives on managing these diseases and helping others like her for many years. In addition, she has been involved in some of the earliest forays into the use of digital and social media by pharma to engage with patients.
Throughout our conversation, Lisa paints a picture of a pharma industry that has been trying to use these new channels to help disease sufferers for far longer than many may suspect, albeit often through short-term initiatives. However, a key theme emerges which is consistent with other epatient interviews in that lack of access to the right drugs can be a major frustration, but an area where pharma could pay a greater role. In addition, Lisa highlights how the drug industry could better the drug development process and its role in disease management to patients.
Whilst many of her observations can be applied across numerous disease areas, watching this interview is a must for anyone intimately involved in the MS or RA areas, in whatever capacity. If you want to dip in and out quick time links are provided below, flagging relevant portions of the interview.
Click on the play button below to watch the video.
0:12 – Lisa’s story as an epatient
1:23 – Challenges in getting the right treatment
2:29 – How pharma can facilitate patient access to drugs
6:11 – Experience of the social web in disease management
7:52 – Lisa’s perspective on pharma’s online presence
9:33 – How pharma can better communicate its role to patients
11:49 – Good examples of pharma activity
14:20 – Advice for other MS and RA patients
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About the interviewee:
Lisa Emrich is a blogger, musician, e-patient, teacher, advocate, and friend, living with multiple sclerosis and rheumatoid arthritis. Lisa originally began Brass and Ivory: Life with MS and RA (brassandivory.org) in 2007 as a way to discuss and document her struggles navigating the maze of healthcare, health insurance, and drug assistance programs as a self-employed musician in Washington, D.C. Now Lisa uses blogging to connect patients online, raise disease awareness, and encourage self-advocacy and patient empowerment. She founded the Carnival of MS Bloggers (msbloggers.com) to connect and feature the online MS community and writes extensively for HealthCentral.com on topics related to MS, RA, and obesity. Lisa serves on advisory boards for the National Multiple Sclerosis Society and Rheumatoid Patient Foundation, as well as advises pharmaceutical companies on how to better serve patient needs. She was a featured patient blogger for the unbranded initiative HowIFightMS.com sponsored by EMD Serono. Follow Lisa on Twitter @LisaEmrich.
What can pharma do for MS and RA patients beyond drugs?