Patient Involvement: Is pharma doing enough to involve patients in its work?

Scan the visionary statements of the major pharmaceutical companies and a common theme quickly emerges – pharma wants to do everything it can to improve patient outcomes.

This is very much aligned with with George Merck’s words: “Medicine is for the people. It is not for the profits. The profits follow, and if we have remembered that, they have never failed to appear. The better we have remembered it, the larger they have been.” (Address to the Medical College of Virginia, USA, 01/12/1950)

From this foundation, ‘patient involvement’, ‘patient engagement’ and ‘patient-centricity’ have become increasingly popular terms in the pharma vernacular, meaning patients are at the heart of everything we do.  The intention is great in theory, but what do we actually mean in practice?

There are already lots of great examples of pharma co-creating programmes with patients, creating patient-focused roles and becoming more patient-focused in how they measure success. These are all clear indications that patient involvement can help shape the future of pharma.

However, if we are to truly put patients at the heart of everything we do, we need to be ready to share some power with patients so decisions are made together as partners. Or as former NHS Patient Tsar, Harry Cayton, more eloquently put it ‘Nothing about us without us’.

For example, imagine creating patient positions at board level so patients can input into decisions about a company’s direction? Or go beyond hard sales targets to co-create key performance indicators (KPIs) with patients that matter to patients?

At Aurora we use our tried and tested PARTNER framework to help our clients involve patients in a meaningful way.

Patient outcomes: Identify the patient outcomes you are looking to achieve as a result of your work and ensure their achievement can be measured

Alignment: Ensure as far as possible that patients have an equal level of information to maintain a balanced group dynamic

Rules: Develop a shared understanding with patients of how you will work together, including expectations for the work and any boundaries, so everyone feels comfortable sharing honest opinions

Techniques: Use advanced facilitation techniques to go beyond surface insights to understand subconscious and emotional drivers of behaviour

Narrative: Co-create a compelling narrative with patients that demonstrates the value of patient involvement work to the company and to the patient community

Everyday language: Communicate clearly and openly in plain language terms to create an inclusive atmosphere where misunderstanding is minimised

Rate of attrition: Provide honoraria for each activity patients participate in, provide opportunities for patients to feedback and show evidence of feedback implementation

Since our beginning in 2005, Aurora has been working to make a difference to patients. We do this because our vision is aligned with George Merck’s famous words. Meaningful patient involvement starts with creating a culture where patients are treated as partners. Our Deeper Insights approach can help you involve people with health conditions in a way that makes a difference to patients and achieves your business goals.

You can find out more about how we can help your company involve patients in a meaningful way by getting in touch with me on 020 7148 4172.

Patient involvement is one of three strands of our Deeper Insights service offering, which also includes medical education and data storytelling.

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