Last week I read in an article that 72% of patients do not feel listened to by pharma.  This is a very sorry state of affairs, but sadly does not surprise me.  Whilst patients are the end users they are not seen as customers.  Traditionally patients have not had a say in the choice of medication and had to rely on everything their physician told them.  In the era of the blockbuster there was little perceived reason to be listening to patients.

How times have changed!  Patients increasingly have a say in their healthcare, including their prescriptions.  They also no longer have to rely solely on their physician for health information. Patients have become empowered and vocal.  Whilst the pharma industry may not be listening, other patients, and increasingly their doctors, are.  More and more patients will no longer accept the status quo and this potentially has a huge impact on the pharma industry.

Besides being the ethical thing to do, listening to patients now also makes business sense.  The industry has got far more competitive and budgets are tighter. Better understanding of patients helps with everything from clinical trials to marketing to improving adherence and outcomes.  All of these things have an impact on the bottom line. Industry itself is starting to recognise this shift – at least in their external communication.  Go to any major pharma website and you will soon find some blurb about how important patients are or how patient centric the company is.

Many years ago I did a consulting project were I was tasked with making an analysis of how patient centric companies really were.  This was based on what could be found externally.  All of them stated the importance of patients, most of them said this on their homepages.  Analysis showed however that this was mainly talk.  Very few of them got close to what we would call being patient centric.  Sadly this has not changed much over the years.  The industry is still not patient centric, and yet it really should be.

There is also now a real threat that pharma may soon be competing with the big tech companies like Apple.  This would be a game changer. These are companies that really understand their end user.  Currently there is no way pharma could compete with companies like these. Whilst pharma does understand the “middleman” (i.e. doctors) they still have far too little understanding of the end user (i.e. the patient).

So what does the industry need to do to change?

Increase resources

When you look at pharma companies they have huge departments dedicated to engaging with healthcare providers (HCPs).  Most brands will have a dedicated marketeer and a dedicated medical lead.  When it comes to patient advocacy however it is a different story.  Patient advocacy teams are still tiny in comparison to medical and marketing.  Few brands have a dedicated patient lead.  This also translates to far fewer insights on patients within teams.  This actually vindicates the statistic that most patients do not feel listened to.

Budget for patient resources and content is also minimal compared to that for HCPs.  Again this is often due to false perceptions.  Firstly there is the  perception that patients are not decision makers in their own healthcare.   This is changing as more and more patients become empowered.  Whilst doctors still are key decision makers, increasingly patients will be actively involved in those decisions.

Secondly there is the perception that due to regulations we can not talk to patients. Whilst in most countries we cannot promote our products to patients we can still support patients and provide them with useful information.  It does however have to be good quality, and digital first, if patients are to see and use it.

Hire patients

No one understands patients better than another patient.  Patients bring a level of passion and commitment that is hard to replicate.  The insights I have been able to bring my clients as an autoimmune patient have been invaluable.  They are also often eye-opening for the client.  Yet when you look at patient advocacy or other teams, how many of them actually have first hand experience of the disease they are working on?

In fact for me I see a win win situation, particularly in autoimmune diseases for example.  Some patients are unable to work full time, and as such may struggle to find work.  Meanwhile pharma companies are in desperate need of getting, and embedding, deeper patient understanding and empathy.  Why not offer these patients part time work within pharma?

Be social and be brave

Social media is the key channel for many patients.  When we look at how pharma companies use this channel however it is still years behind where it should be.  There is still this fear of engaging with patients due to regulatory constraints.  When patients do reach out to pharma companies via social they do not always get a reply.  This further drives this perception of not being listened to.

The reality is that there is a huge amount we can share with patients via social media and other channels.  As a healthcare industry with a wealth of information on diseases we could contribute so much more to the conversation.  We could provide so much more value to patients.   Social listening should be the norm, not the exception.  Insights from this should drive resources and assets for patients based on what they need.

For the skeptical it is worth pointing out that more empowered, educated and supported patients tend to be more adherent.  This means better outcomes – including in revenues. A stronger voice for patients by the industry can also help build trust.  This in turn can have an impact in combatting all the fake health information out there.  It makes business sense to start listening to patients.

At the end of the day we should all remember that as an industry we are there for the patients.  Without patients none of us would have jobs.  Our patients are our end users and we absolutely should be listening to them and understanding them.  If we do not someone else will.

Having worked in the pharma industry for over twenty years I have seen change but far too little and too slowly.  The clock is ticking – but will we change in time and start listening?

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