Over the past year I have witnessed something wonderful. A gathering momentum from pharmaceutical companies to explore and add value to the patient experience. In a political climate where scrutiny on pharmaceutical business practices is increasingly severe, I actually see a ray of sunshine. Across so many disease areas we are on the cusp of greater patient support that will undoubtedly lead to improved experiences and outcomes.

Spending on patients when drug price is under heavy pressure

Perhaps biased, I have a lot of respect for the pharmaceutical industry. Across the board my clients in this space are genuinely interested in and concerned about the patient experience. It isn’t simply about the treatment pathway, it is about the entirety of the patient journey. Ups and downs; highs and lows. When it comes to market research in this space there is great interest, passion and compassion throughout the whole process. This is refreshing and heartening.

The fact that this passion and compassion persist even in the wake of never ending pressure on prices is humbling. We have all seen the coverage of Donald Trump taking on the pharmaceutical industry in the US. You would think that cutting funding for patient support would be on the cards to compensate for price reductions. But I haven’t seen this. What I have seen is a growing commitment to the patient during these trying times.

A broadening focus

This interest is also expanding to close family members and friends as well. In more serious illnesses and chronic conditions, this wider network of individuals provides a critical support role for patients, but as individuals they are often overlooked: their perspectives are an un-tapped resource. Insight into their experiences and nuances in terms of interactions with other health care professionals along the patient’s journey are key to figuring out where and how we can make a difference.

The role of research

As insight professionals it is our duty to help our pharmaceutical clients turn their visions of patient support initiatives into reality. It is no easy feat, however, to identify when – and how – could be the most meaningful time to intervene and offer support. The research we conduct around these kinds of business issues needs to go the extra mile. And as researchers we need to think outside the box.

Some things to consider: 

• WHO: Take a step back and consider the wider context. Who other than the patient can give a valuable and potentially different perspective on their journey and support needs? Carers? Yes. Family young and old? Yes. Friends? Yes. Now take a further step back. Patient associations, patient advocacy groups, patient support groups – these are all led by individuals with unique helicopter perspectives of the aggregated patient journey and their viewpoints and ideas are invaluable.
• WHAT and HOW: Think methodology. What do we ask patients, carers and other family members to do as part of our insight gathering journey? Increasingly we have been leveraging mobile technology for in-the-moment capture of experiences. Exploring the group dynamic that surrounds a patient (e.g., with carers, family, friends and the like) is a fascinating window into the immediate support ecosystem, dynamics, and pressure points. What is missing and how can we help?
• WHEN: Anchoring insight gathering around specific time-points or milestones is key. For example, tasks (including short filmed sequences) around a treatment experience whether in home or hospital is incredibly rich. Capturing this from multiple perspectives simultaneously is gold dust. What about the milestones of family and friends along the journey?
  

Improving the patient experience can improve disease outcomes. This is indeed a bold statement, but one I have seen both hard and anecdotal evidence for time and time again. Ganguli et al., in their recent meta-analysis on the impact of patient support programmes on adherence and patient outcomes found this to be the case. And take this Humira traveller for a ‘real world’ example. The drug company that makes his treatment offered him the right support at the right time to make his longed-for holiday dream come true. This had a positive impact on how he perceives his illness and treatment – no longer limiting but freeing.

We need the right kind of insight, however, to make more of this happen. My hope is that this patient-centric momentum we are witnessing at the moment translates into the gathering of deeper and more actionable insights that are indeed turned into targeted and effective patient support programmes.

Dr Pamela Walker is head of health and a director at Incite