Tunnah’s musings: lessons from listening to patients

Paul Tunnah


As pharmaphorum focusses content in February on the topics of patients and rare diseases, Paul Tunnah looks back at the patient interviews already conducted and what lessons can be learned from them for the pharma industry.

If you have been following pharmaphorum in February you have probably noticed that we are focussing this month on ‘patients’ as our discipline focus, alongside ‘rare diseases’ as our therapeutic focus. This means we are featuring perspectives from a number of patients and supportive groups, providing a great chance to listen to their needs.

However, talking to patients is not a new thing for pharmaphorum – over our first few years we have done a number of patient interviews and it is always fascinating and informative to listen to their views. As my ‘musings’ piece this month I thought it might be useful to summarise the key points that seem to recur in these discussions.


“Pretty much all of the patients we have spoken to really want to have more dialogue directly with pharma…”


Talk to us

Pretty much all of the patients we have spoken to really want to have more dialogue directly with pharma, driven by a need to share their experiences, provide feedback or simply get to know the people behind the companies developing new medicines.

We all know the challenges that the regulatory environment poses in speaking with patients – outside the US product promotion is to be avoided and any discussion linking to side effects has to be properly tracked and reported. But if you look beyond those (relatively simply to jump) hurdles, there is significant benefit on both sides from greater interaction.

As issues like real-world outcomes become more important for access and drug adherence impacts the outcomes possible, it is in everyone’s interests to keep talking. Physicians are not always as well connected to their patients as they might like to think, so relying on them for feedback on drug use is missing a trick, plus patients can provide some great insight into areas of unmet need and new development opportunities.

Explain your business

One of the key recurring messages we hear from patients is that the way the pharma industry operates is a bit of a mystery. These are smart, well-educated individuals who take a lot of time to understand their disease and the scientific basis behind it, but they often find information around the drug development process and the rationale behind drug pricing tough to find.

Patients also generally appreciate the essential synergy that exists in the pharma industry between providing new medicines today and ensuring profitability to develop the new medicines of the future, but that only goes part of the way to explaining why the critical treatment they need is priced so high that access becomes a problem.


“One of the key recurring messages we hear from patients is that the way the pharma industry operates is a bit of a mystery.”


If price puts a key drug out of reach for a patient who needs it then no explanation is going to be fully satisfactory, but by taking time to explain, in plain English, how new medicines come to market and what it costs to do this then accusations of profits before patients may at least start be addressed and greater trust built.

Think long term

Over the past few years, pharma has invested heavily in disease awareness and information focussed initiatives, particularly in the digital space where communities of patients gather around useful information and peer-to-peer support that helps manage their illness.

The debate rages around whether such pharma-led initiatives will ever be trusted as much as independent ones or whether they are transparent enough in their backing and objectives. However, discussions with patients reveal this is not the biggest potential issue. Such resources are always welcomed, but equally missed when they suddenly disappear.

So if, as a pharma company, you are investing in building a new patient information centre or disease community think very carefully about whether you are in it for the long term. If the initiative is going to die when the marketer involved moves onto their next role, or new management adopts a different strategic direction, then you probably should think twice about doing it. Building communities and trust takes a long time (we know first-hand!) but destroying both can be all too quick.

Focus on the need, not the drug

Everyone in pharma is talking about developing broader support services around particular disease areas, rather than just selling drugs, but patients want to see pharma really start to embed this into its culture and put words into action as they can also see mutual opportunities here.

“…try to forget about your drug for a moment when getting to grips with the real patient needs.”

This is, of course, already happening in many areas but if such services are thinly disguised attempts at increasing drug market share patients can spot it a mile away. There are clear areas of need around issues such as effective diagnosis and drug adherence that are win-win opportunities for pharma and patients.

There are also areas of unmet need within disease areas that, if addressed, yield no immediate benefit to pharma in terms of drug profits. But in using its innovation and commercial skills to address these challenges pharma can develop really positive relationships and trust with patients and healthcare providers, which can only be mutually beneficial in the long term. The message from patients: try to forget about your drug for a moment when getting to grips with the real patient needs.

These are, of course, just a few key observations from the patient discussions we have had and there are many more lessons to be learned for those willing to listen. So, to all those patients who have spoken with us so far – thank you for taking the time. And for our readers in the pharma industry, please keep an eye out for more patient views this month and let’s keep learning together.

Remember – ‘patients’ is not the latest trendy buzz word, they are the reason why we do our jobs. Until next month, stay well.

Paul Tunnah will be joining a panel discussion on the topic of ‘Pharma on trial – building a new image’ at the forthcoming Economist Pharma Summit 2013 on February 28th.


About the author:

Paul Tunnah is CEO &amp, Founder of pharmaphorum media, which provides digital content marketing and communications solutions for the pharma sector and also manages the industry leading channel www.pharmaphorum.com, a digital podium for communicating thought leadership and innovation within pharma. For queries he can be reached through the site contact form or on Twitter @pharmaphorum.

What do patients want from pharma?