Engaging patients right from the start

A recently conducted deepdive® Workshop revealed how big the gap can be between R&D priorities, and what matters most to patients.

Meike Wenzel, Partner at Executive Insight, talks about the importance of engaging patients early on. 

Interview: Early Value Definition: Engaging patients right from the start

Is patient engagement just the next buzzword?

When we speak to our clients about patient centricity or patient engagement, we can see that many are really trying to do it. They want to bring it to the next level. And that means that companies don't just look at whether a drug is safe and is working, but they try to really understand how the treatment can best address patient needs and what else might be required to better support patients. 

What are good examples of patient engagement?

For example, there is Novo. They have a very comprehensive support program for diabetes patients that goes way beyond just disease and drug information and really supports patients in managing their everyday life with a chronic disease. 

In general, we find that companies with a strong focus on a specific disease area seem to best engage with their patient communities. That's also why specialised companies like ViiV Healthcare or also Lundbeck regularly score high in rankings done by patients. 

How can patients be involved early on?

Engaging patients early on is not easy. Patients might be scared by lots of scientific terminology and technical details. And it's also not easy for researchers. They might need to change their way of thinking, and acknowledge what matters most to patients. 

At Executive Insight, we have conducted a study, both with pharma companies and with patient organisations. And the result is that, despite these hurdles, there is a strong willingness from both sides to work more closely together, especially also in the earlier phases, in research, in clinical development, and also in the approval phase. 

What impact can patients make in the development phase?

A few months ago, we conducted a deepdive® workshop with patients who had a specific kidney disease. The workshop had an entirely open approach and we let patients talk about their thoughts and feelings. 

Now it turned out that the greatest fear of these patients was having to go on dialysis, several hours, multiple times a week. That's quite a burden. Statistically though, for most of them, the much more likely event is to have a heart attack. 

So we can see how there can be quite a disconnect between what matters most to patients, and what the research priorities are: Dialysis versus heart attack. 

What are key success factors for patient engagement?

We see three key points. The first one is to develop a culture of listening and learning. What we sometimes see is that pharma companies run an ad board here and a patient workshop there, but patients don't know what is happening with their input. And also internally, the patient input is often not leveraged much. 

This is not really patient engagement. So there needs to be this openness and also commitment to engage in the longrun, to start building trust and to get to a real partnership. 

The second point is a much debated one, and that one is about compliance. It is true that at the moment there is uncertainty about how to interact with patients in a compliant way, but doing nothing is really not an option. You need to sit down and productively work with compliance to really explore what can or cannot be done, and how internal processes might need to change - because there is a way to do it. 

And the third point is to better organise for patient engagement. Today, what we see in a lot of pharma companies, is that many functions interact with patients in one way or another; could be Medical, could be Public Affairs or Advocacy, could be Marketing. And recently, companies have even introduced new roles like Patient Officer on top of that. This can be quite confusing for patients. These functions need to sit together and define a framework for patient engagement and who does what within that. 

So in summary, we believe that patient engagement is the way forward and in fact leads to a win-win situation: Done right, pharma will have strong value propositions and therefore a market for their products. And patients will be getting the support they really need.