Very brief intro slide – probably will not show slide - will talk to this on the title slide. Questioning what is the real value of social media. Will tailor based on what others were talking about e.g. “We heard earlier about …”
This slide discusses the biggest impact social media can have – namely through saving lives. Talk about how we are all here to help improve and save patient’s lives – and social media empowers us, as well as all our stakeholders, to do this in a new, impactful way. - MESSAGE – don’t just think about push marketing when you look at social media – remember it’s true value & why we are here – it’s all about the patient and being patient centricity. Plus – our stakeholders are engaging already – we have a responsibility to be part of the conversation
http://www.savingcase.com/
http://www.slate.com/articles/double_x/doublex/2011/07/how_facebook_saved_my_sons_life.html
http://www.link-assistant.com/blog/how-social-media-saved-my-life/
http://www.dailymail.co.uk/health/article-1362553/Facebook-saved-life-Leukaemia-boy-4-diagnosed-father-posts-rash-picture.html
http://cen.acs.org/media/slide-show/2013/04/cen-09119-cover1-Slide1CopyElaprasecxd-sld1.html
Very brief slide going through basics of the patient journey, positioning this as the structure for the bulk of the presentation. Flash Dr Google up quickly to mention the new digital dimensions to this journey.
1 in 10 / 1 in 17 people will suffer from a rare disease – average diagnosis time is 5 – 7 years (UK – US).
Awareness raising best known – drive people to get diagnosed
Checking symptoms online (before or after seeing doctor)
http://www.cbsnews.com/news/kawasaki-disease-diagnosed-on-facebook-saves-young-boys-life/
https://www.pinterest.com/pin/245375879669844322/
Reaching out to network – or indeed networking reaching out to patient
http://www.cbsnews.com/news/kawasaki-disease-diagnosed-on-facebook-saves-young-boys-life/
https://www.pinterest.com/pin/245375879669844322/
Next step in patient journey
Wikipedia of course plays a big role in providing information
But issue is also that doctors don’t have enough time to provide all information. 33% of patients diagnosed with rare disease felt that the way diagnosis and information was delivered was unsatisfactory. Doctor’s don’t have time to provide anything but basic treatment information – rarely having time to talk about lifestyle changes etc. in depth.
Patient associations and other patients & patient resources provide information that patients need – as well as support with the diagnosis
http://www.mindbodygreen.com/0-12913/what-doctors-wont-tell-you-about-autoimmune-disease.html
Wikipedia of course plays a big role in providing information
But issue is also that doctors don’t have enough time to provide all information. 33% of patients diagnosed with rare disease felt that the way diagnosis and information was delivered was unsatisfactory. Doctor’s don’t have time to provide anything but basic treatment information – rarely having time to talk about lifestyle changes etc. in depth.
Patient associations and other patients & patient resources provide information that patients need – as well as support with the diagnosis
http://www.mindbodygreen.com/0-12913/what-doctors-wont-tell-you-about-autoimmune-disease.html
Treatment – not speaking to anything on this slide – just a step slide
Looking for product information but also getting input from other patients, getting support etc.
http://www.medicaldaily.com/social-media-viral-videos-help-researchers-find-patients-rare-diseases-clinical-trials-277732
Aug 2014: the ALS Association had received $53.3 million since July 29, compared with $2.2 million by that time last year. To put it in perspective, the National Institutes of Health’s yearly budget for ALS research is $40 million. Other ALS charities are also benefitting similarly from the campaign. http://www.technologyreview.com/news/530321/how-als-could-benefit-from-a-flood-of-new-funding/
Step slide – nothing to present
Talking about finding clinical trials but also organising patients to set up trials as well as researchers finding patients for trials
http://www.medicaldaily.com/social-media-viral-videos-help-researchers-find-patients-rare-diseases-clinical-trials-277732
Aug 2014: the ALS Association had received $53.3 million since July 29, compared with $2.2 million by that time last year. To put it in perspective, the National Institutes of Health’s yearly budget for ALS research is $40 million. Other ALS charities are also benefitting similarly from the campaign. http://www.technologyreview.com/news/530321/how-als-could-benefit-from-a-flood-of-new-funding/
ALS – example of how social media raised substantial money
Patient lobbying resulting in product approval (Lemtrada)
http://www.medicaldaily.com/social-media-viral-videos-help-researchers-find-patients-rare-diseases-clinical-trials-277732
Aug 2014: the ALS Association had received $53.3 million since July 29, compared with $2.2 million by that time last year. To put it in perspective, the National Institutes of Health’s yearly budget for ALS research is $40 million. Other ALS charities are also benefitting similarly from the campaign. http://www.technologyreview.com/news/530321/how-als-could-benefit-from-a-flood-of-new-funding/
http://www.mobilehealthglobal.com/in-the-news/news/107/epatients-changing-healthcare-with-technology
http://www.stltoday.com/news/local/metro/fda-reverses-course-and-approves-promising-yet-risky-drug-to/article_76c16c61-36f1-52c5-a6c0-da56cc6498d9.html
http://www.usatoday.com/story/news/nation/2014/03/13/multiple-sclerosis-lemtrada/6345043/
The obvious answer - insights
Driving more patients to present to their doctors. You don’t have to be the driver of disease awareness campaign – can just join & support others
Providing diagnostic support and information both to patients & HCPS
Helping HCPs get to the right answer quicker & getting input from their network
Providing patients with information and support so they can better manage their disease and adhere to medication
Using social media to find patients, etc.
Empowering patients to take action – e.g. lobby for drug approval
The impact social media can have on corporate reputation – in general but also in a TA