Imagine feeling constantly sick or in pain.  Imagine going to doctor after doctor but still not receiving a suitable diagnosis or any idea of what is wrong with you.  Imagine being told you are making it all up or it is all in your head.  Imagine your life as this never ending litany of discomfort and pain with no hope in sight.  This is the life of an undiagnosed or misdiagnosed patient.  This is the reality faced by many rare disease patients, who on average wait 5 to 7 years for a diagnosis.

Imagine now that you find someone who feels like you do and understands.  Imagine finding someone who has gone through the same symptoms and issues.  Imagine finding answers and support.  This is what social media has enabled.

Before social media rare disease patients, and their families, often lived in isolation, with no contact to anyone else going through the same thing.  If they were very lucky there might have been a local patient association, but often they did not even have access to this.  They had very few people to turn to for support or answers.  They had very little power.

Today’s technology has changed this – enabling patients and their carers to connect with each other.  To turn to each other for support and answers, but also to get critical mass to drive action for their disease.  It is empowering patients to not accept the status quo and keep fighting for answers and diagnosis.  Social media is having a positive impact in reducing diagnosis time for patients, in connecting them to clinical trials, and in helping to cope and live better with their disease. In some cases it is also enabling access to medicines and funding clinical trials.

It is also helping doctors get answers by providing them with access to global experts and other doctors who may have dealt with a patient with the same rare disease.  It is helping them to spot those rare disease patients when they walk through the surgery door.  It is also helping doctors to better support their patients.

For the pharmaceutical companies working in rare diseases social media should be one of their highest priority channels.  Unlike in other disease areas, in rare diseases each individual patient is incredibly valuable (financially) but can be very hard to find.  The delayed diagnosis times costs the industry, and healthcare systems and providers such as the NHS,  millions.  The delays in clinical trials due to delays in finding those rare patients, also costs a fortune.

Social media supports the industry in finding those individual patients, and connecting them with other patients.  It also enables them to reach those doctors actively looking for answers.  It enables them to run targeted disease awareness campaigns to help support improved diagnosis.  It also enables the industry to better understand the patients and their needs, and in turn better optimise activities.  For example understanding the terminology used by patients – including those looking for diagnosis – and where they are turning to for information, can lead to more impactful and effective disease awareness campaigns.

Social media provides the pharmaceutical industry with the most amazing opportunity to connect and learn from its rare disease patients and families, in a way that no other channel has ever been able to do.  It is also an extremely cost effective channel to use, and one which can continuously provides new insights.

Despite this however it is still woefully under-prioritised and utilised by the industry.  Just looking at the activity on this channel of some of the top players in rare diseases shows a clear lack of understanding of the channel and its impact, both to patients and HCPs, but also to the company.  Sadly whilst some of the brand teams may now realise its importance often senior management does not.  This lack of understanding means that teams do not have access to the resources, including headcount and training, that they need to succeed in social media.

Often in order to succeed in social media pharmaceutical companies need to increase headcount or prioritisation of activities to the channel, as well as incentivise stakeholders, such as MLR, to co-operate and change their behaviour and timelines.  There is also often a need to change internal process in order to enable social media engagement but this too needs support from senior leaders.

What the rare disease industry needs is a concerted push to train and educate senior leaders on the importance and value of the channel.  This can be done via traditional training, or more tailored programmes such as reverse mentoring.  The benefits of reverse mentoring are that the programme can be personalised to the individual and go into as much depth or breadth as they need and are interested in.  Often through reverse mentoring senior leaders have an “aha” moment which in turn leads to positive impact for both the individual but also the organisation, as the senior leaders starts to drive the change needed.

The fact is that as an industry we still have a large amount of change to drive and in rare diseases one of the biggest – and most urgent areas – is around our use of social media.  We need to support our senior leaders to drive that change and in the end that will benefit not just the organisation but also ultimately the patients and their families.




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