Integrating the patient voice in the pharma industry

Today’s consumer is empowered. Empowered to find their own information and empowered to share their opinion. When designing the new iPhone, Apple had the consumer experience in mind. They ensure they understand their customers’ needs, and consider how to make their lives more convenient and always exceed expectations.

Similarly, patients are more informed and aware than ever when it comes to their health, but whilst they are no longer passive recipients of care, there is still more to do to make sure their voice is heard. There’s an opportunity for better dialogue between patient organisations and pharma companies to ensure patients have easier access to information about their condition and can help develop new treatments.  This is particularly important for patients in the rare disease community, where research around their specific disease might be lacking and few people know what it’s like to really live with the condition.

As Carolyn Wheatley, patient expert and founding member of patient advocacy group, PINNT (providing support and advocacy for people on home or artificial nutrition) explains, “things have changed and improved in recent years, but there is more to do to ensure patients have a ‘seat at the table’ and are involved every step of the way in decisions about their health.”

Due to Pseudo Obstruction – a rare condition in which you have symptoms of intestinal obstruction - Carolyn is fed intravenously using parenteral nutrition (PN). Prior to starting PN she experienced a rollercoaster ride of being misdiagnosed, misunderstood, and feeling very isolated. Today, Carolyn is a member of PINNT, a patient organisation which brings together people who require artificial nutrition at home in a forum where experience, fear, and ideas can be shared. The point at which artificial nutrition is commenced is daunting despite it being a life-saving treatment, it is life-changing; there may be tubes, catheters, regimes and complex procedures to master in order to perform the treatment required. In addition, there are life-style modifications to be made, and PINNT aims to support members to achieve this on an individual basis. If the ability for oral intake is compromised or limited, being part of a forum where people can offer support plays a relevant role to adapting to life with artificial nutrition.

I spoke to Carolyn to get her expert opinion on amplifying the patient voice within the pharma industry and making sure every patient is considered in decision making.

Q: The Pharma industry talks a lot about being patient-centric, but what does that really mean and are you seeing it in your interactions with pharma companies?

A: There’s a fine balance between wanting pharma companies to understand our needs, without seeking sympathy. As patients, we want to contribute to the understanding of the reality that comes with living with our rare conditions so that information can be used empathetically to support the science. By increasing their association with patient organisations like ours, pharma companies could get closer to patients and develop a much deeper understanding of them as people, not just patients. We want them to be authentic, and genuinely care about supporting the community – not just sensationalise the patient experience.

Q: Is the patient voice really being heard and is it driving better patient outcomes or just the business?

A: We’re getting there and have come a long way. Engagement needs to be greater on the level of understanding. We are happy to share information but sometimes it gets filtered down to fit the requirement of the pharma company instead of meeting the needs of the patient. However, the patient voice is gaining momentum. It’s becoming stronger and we demonstrate that through the work we do with the National Institute for Health and Care Excellence (NICE).  For example, I recently took part in a committee to convey the patient's perspective of living with PN and short bowel syndrome which secured the approval of a new treatment to give people a choice where clinically indicated.

Q: How can pharma companies improve their patient-centric approach?

A: As patients, we commit to clinical trials to further medical science and we want to know our participation has been valuable. All too often, we sign up to research for data gathering or testing and we don’t hear the feedback or results. There should always be patient friendly outcome data that’s accessible because much of this is only available in the healthcare area or industry.

We understand that the problem is intricate. Patients can’t deal with pharma directly; they need professional consultations which makes communication harder. However, an opportunity exists for patient data dissemination to be improved and encouraged. Pharma should make trial data simple for patients to understand and give them feedback. That will serve two purposes 1) to feel they’ve made a difference and 2) to encourage other people to join the trials in the future because they will understand what’s involved, which mutually benefits everyone.

Q: How should PAGs and pharma work together?

A:  We need to build a stronger, ongoing community of pharma and patient advocates where we can all help each other. Pharma should be looking to bring together other patient advocacy groups to build their confidence and to build a better working relationship with pharma. Let’s bring down the barriers and build and maintain communications for the future mutual benefit of everyone.  

Communication needs to be earlier, more often and more patient friendly. We need to find a way to give patients feedback despite compliance barriers, making information about health more accessible for all.

Q: What would your advice be to the pharma industry?

A: Don’t just tick the box. Pharma companies need to be sincere and value everyone for the worth they bring to the cause. I want to see the sincerity that pharma understands my situation and we will both work together to make it better, not just for me, but lots of other people. If I can’t have that treatment but someone else can then that’s a feel-good factor. It makes me feel my contribution has been valuable.

Patient advocacy groups should be valued, no matter the size. The rare disease community, by nature, has a small patient size, and so patient groups are smaller, yet still valuable. There needs to be an understanding that every patient is different. Every experience counts. There’s a range of capabilities within the patient community and every situation is relevant to that individual. We need to be more accepting of the variation or impact of a condition – i.e., a quiet person might be suffering more, so it’s important to look at a range of patient experiences when making decisions.