During the Hcsmeu weekly debate last friday a very interesting question was asked: In what way do you think social media can expand awareness for rare diseases? I feel that social media will not only raise awareness for rare diseases, I feel in time it will push innovation in ALL diseases towards a cure. Will Scientists share information yes, we already have the likes of GSK and Novartis using open source databases for Malarial trials and compounds. We have the next step with Pfizer using an open source slide share system which will be invaluable for healthcare professionals presenting the latest innovations. This system could be used as a reference tool for upcoming presentations and trials to check what’s been achieved and progress. The system has unfortunately been taken down and I hope we shall see it back up again perhaps using a comment format so researchers can ask and comment about each others work.
The open source databases obviously speak for themselves as companies hit dead ends with diseases and start sharing their findings with competitors as happened in 2009 with Stephen Friend leaving Merck and releasing Sage , a genetic database used in biologics and shared among the scientific and commercial genomics community. This database is designed to check which drugs react well with which genetic make ups. This is not a pharmaceutical company database, rather a neutral database used by physicians when prescribing and pharmaceutical companies to offset against their own databases, after all you can’t really steal a genomic! You can however seriously progress a disease if you get the genomics wrong. This is also a very important step towards using open source sharing to further personalise medicine. And therefore mapping rare disease in the form of genetics.
Obviously the patients themselves also bring awareness through chat rooms and the simple human basic need to talk to someone else with the same orphan disease which can at times number only thousands worldwide. As excellent open source website for rare diseases is the HON dossier this fantastic website lists all orphan diseases, plus all patient/HCP websites, articles, clinical trials, news and definitions in, wait for it, 5 different languages. The site was easy to find and has information on both disease and drugs used in rare diseases around the world.
In summary I don’t think there is any big secret to social media helping to innovate or raise awareness for rare disease or diseases in general, I don’t even think it’s a case of analysing the term social media and attempting to describe which particular facet would best suit this movement. I think it is as simple as following the lead of innovative companies admitting that they have come to a dead-end, (Alzheimer’s would be the next good candidate for this), and SHARING, that is social after all…..
Congratulations Shelley on publishing your first blog!
Great to see it as a response to our convo at friday last ( Ref. http://bit.ly/2hq5CW).
You draw specifically attention to the effect of using open sources techniques to enhance awareness and research to innovating health care by using social media. I might think that is not the only one. Of course there is more. @BenAtkins asked for the sources you mention and you gave great examples.
But surely there is more to social media and health care. Might I direct your readers to for instance, the relationship of health care professionals with social media:
http://bit.ly/aDHQtt , or even a more structured review of health care and social media, like http://bit.ly/c7oSb5, and of course a specific example of how using social media might elicit forms of integrated care: http://bit.ly/dDi840.
It’s time to write a review of how social media is expected to innovate health care, but as you suggest, the basic principle is sharing: so let’s go on with it!
Success with your blog!
Rob.
Hi Ben and Rob many thanks for my first comment. The peice is actually referenced by hyperlinks which I have not made clear once I have got home I will read articles.
Hi Rob,
Many thanks for sending over the links, this is the very essence of my point. I start with a building block and my colleagues and peers built on this, bettering what has been written before and progressing the ideals of my article. Evolving Social Media as they do naturally.
This peice was not meant to an overview or even a criticsm it is a start of a innovative blog which I hope will be used as a building block in someone else’s blog and idea’s.
And yes I am glad you and I agree, it is that simple to share, so please comment away everyone and feel free to tweet ideas over.
What a great way to kick of a new blog! Point of transparency – #Iwork@novartis and these are my personal views and don’t necessarily reflect the views of my employer. I really appreciate your post and Rob’s response. I see a difference between social media marketing and using social technologies to address peoples and society’s health challenges. And for me this discussion we started Friday about rare diseases fits into the latter. At risk of sounding hopelessly idealistic, I aspire to challenge my organization to develop distinctive, lasting and substantial improvements to patients’ lives through social technologies while advancing our knowledge and understanding of disease, and our ability to deliver effective products and services. Your thoughts on the topic of rare diseases is really insightful. Thank you.
Hi Ben,
Yes I agree, social media is not just about the marketing is hs evolved into a fine art that has spun off from business. This business has spurned rare drug awareness sites which would otherwise have been lef untouched, this business has spurned orphan drugs which would never have been concieved if a thriving business had not been behind it.
Social media is so much more than marketing and I think open source databases and collaborations between pharmaceutical companies is definately the way to go. I am really glad you liked my post and any other ideas or info you would like to pass on is most welcome.
Thank you Ben
You did state it indeed Ben, the :”..difference between social media marketing and using social technologies to address peoples and society’s health challenges”.
That’s what it is all about in media and health. Also the consequent challenge to everyone in care for health to create a sustainable development to improve people’s live.
I couldn’t help myself to express my enthusiasm with sahring our views.
In this way Michelle, is your blog a great medium to start with!
Thanks,
Rob