hashi6I have recently started to look for new opportunities and one area I am extremely interested in working in is patient advocacy, especially within a pharma company.  As such I have now come across a few job postings and a couple of things stood out as being glaringly missing from most job specs.  I extended my search globally to verify that this was not just a European issue but the more I looked the more these glaring omissions became obvious.

The first and foremost is that to date I have not seen a single job spec for patient advocacy roles that actually mention that it would be an additional benefit if you actually are a patient.  In fact many of them do not really even mention the patients and being able empathise with patients, and yet to me this seems like a critical element to working in patient advocacy.  How can you possibly work in this area without having a good understanding of the patients themselves, and being able to understand not only the rational issues they face but also all the emotional ones too?

Whilst I would not suggest that being a patient (either in a specific TA or at least in some form of relevant disease area, for example being a chronic disease patient) should be mandatory but it should surely be seen a huge added benefit? I previously wrote about Abbvie’s HIV patient advocate who is himself an HIV patient – and how inspiring, and successful, he is.  Boehringer also has in the past hired an actual patient to be patient advocate too.  Both of these pharma employees bring a core element to their role – they really can empathise with patients and they truly understand all the issues patients go through.

Young thoughtful woman sitting in stone stairs.Whilst it may be hard to find a patient in a specific disease area for the role, patients with similar diseases or that go through similar experiences can also bring a greater level of feeling to the role.   As a Hashimoto’s patient, for example, I myself know from first hand experience what it is like to have an unusual disease (it depends on which country I am in as to whether I classify as a rare disease patient).  I personally understand the relief of finally getting a diagnosis when you know something is wrong but doctors have ignored your symptoms, e.g. being diagnosed with depression with no questions asked and no blood test being taken (I had a thyroid condition and depression was a symptom).  I also know the frustration of being dismissed by doctors because on paper I am “fine” – when I clearly am far from being fine.

The other thing that being being a Hashimoto’s patients brings me is empathy for patients with chronic and autoimmune diseases.  I know what it is like to have to take pills for the rest of my life. I know what it is like to make lifestyle changes and live in fear of having a set back or getting ill again.  I know what it is like to battle fatigue on a regular basis, and having to educate friends, family and employers about what autoimmune fatigue really means (“yes i really do need that much sleep” “No I won’t feel better after a few vodka red bulls” etc.).

Life as an autoimmune patient

Life as an autoimmune patient

As an autoimmune patient I have also learnt the critical role that the internet and social media plays in finding the relevant information and support for your disease, that often your doctors don’t know, and the value of online patient support.  Without the internet I estimate it would have taken an additional couple of years to get my Hashimoto’s diagnosis.  However many of the job specs I looked at did not even mention social media or the internet as a key skill!  Today the majority of patients get their information online, especially if they have a rare or chronic disease.  How then can having an indepth understanding of this area not be a core skill?  Just because you have experience in dealing with governments does not mean you also have the skills required to advocate for and provide support for patients.  You need to truly understand their emotions, their issues and their key communications channels.  That to me should be a critical element to a patient advocacy role.

hashi4Perhaps though the final element is the importance in having that passion to help patients, and being a patient brings added depths to that passion.   I am a patient and one of the reasons I am so passionate about social media is because I am passionate about the incredible impact it has on patients’ lives.  I am an autoimmune patient and I am passionate about educating others about this often ignored disease area.  I am a patient with an uncommon/rare disease and I am passionate about helping other patients break down barriers to better care and finding better ways to cope such life-changing conditions.

If you are a patient advocate but not a patient can you bring that same passion and empathy to your role I wonder? Pharma when are you going to truly start putting patients at the centre, starting with your patient advocacy roles?


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