A few weeks ago I presented at the SMI #pharmasocialmedia conference around the power of social media. Having uploaded my presentation to slideshare and done an interview about the subject I thought it was about time I actually write a blog post about what I spoke about, especially as it is an area that I am extremely passionate about.
So what exactly is the power of social media in healthcare? When I ask people this question I get many different answers, for example big data and access to insights via listening or extended reach of messages. A few people mention the ability to engage with key stakeholders and build relationships. These are all valid points but to me the power of social media is why more than this. To me social media is a channel that can enhance, change and even rescue lives.
I have had a few people look a tad skeptical when I say this but a quick Google search does substantiate my claim that it saves lives. As to enhancing lives there I can speak about my own experience as a Hashimoto’s patient and how social media and online resources helped me self-diagnose my condition and find out information about my disease (e.g. to go gluten-free) that has had a huge impact on the quality of my life. I have since met many other autoimmune patients with similar tales to tell. With Autoimmune diseases you often need to be make lifestyle changes, and accept that fatigue will be part of your life for the rest of your life. By finding other patients online you can get useful information on how to cope with these facts.
This in turn is what gives social media some of its power – the access to support and information that can support patients but can also speed up diagnosis. This latter point becomes extremely powerful when you are a patient with a rare or difficult to diagnose disease. On average a patient with a rare disease has to wait 5 years (in the UK, in the US it is 7 years) before receiving a diagnosis. This is a huge waste of healthcare resources as that patient gets bounced from doctor to doctor and put on various non-effective medication. The emotional impact of this should also not be underestimated. When I received my diagnosis (both the initial thyroid disease and then later the Hashimoto’s diagnosis) it was a huge relief. My mother had the same thing when she finally received her Churg-straus diagnosis. It may sounds strange but that’s the reality when you’ve been struggling to find out what is wrong with you.
In my case diagnosis meant that I could make lifestyle changes but medication wise I am stuck with a generic thyroxine replacement. Other patients however find themselves no better off post diagnosis as there is no treatment or treatment is too expensive. Here again social media can have a real impact. Patients can use social media to raise awareness and funding to help pay for treatment but also to fund trials. There are some lovely examples of patients, or parents of patients, grouping together with other families and friends to identify trial opportunities, researchers prepared to help and funds to pay for this help. This is a domain that traditionally sits with the pharma industry but this does not hold patients back and has resulted in some pharma, such as Janssen, re-assessing research opportunities based on this patient push. Patients have also played a role in lobbying governments to reverse reimbursement and approval decisions, for example MS patients last year who lobbied the FDA to reverse their decision not to approve Lemtrada – the FDA in the end agreed and approved the product.
For healthcare professionals social media can also have a great impact. Take a doctor who has just had a patient walk in for the umpteenth time with undiagnosed symptoms – they may have an idea of what it could be but need to validate this with a colleague or expert. They can turn to social media, for example through a network like doctors.net, to ask for advice from other physicians. This again can help speed up diagnosis. Doctors also often complain of not having enough time to explain disease aspects clearly to patients. Again social media can help but providing doctors with an online resource to direct patients too, for example a relevant patient association or Facebook group.
All of the above is also beneficial to pharma. Social media provides pharma a great way to gather insights around patients needs and diagnosis roadblocks, as well as build relationships and help relevant stakeholders network to deliver solutions. Whilst pharma will never own this channel, or its discussions, they can support it and help drive some of that power to deliver life changing results to patients. At the end of the day we are all here to help improve and save patients lives so anything that does this should be welcomed, even if it is in the guise of a “scary” channel like social media. And let us not forget that patients are already engaging and taking control of their health – they expect the other stakeholders in their healthcare to do the same.