KCSN is a member of the Association of the British Pharmaceutical Industry (ABPI) Patient Organisation Forum. The ABPI aims to encourage the collaboration of the pharmaceutical industry and charities and to ensure that the patient is at the heart of their work to deliver medicines that have the most impact on people’s health and wellbeing.

Sharon Kell attended a recent ABPI Patient Organisation Forum (POF), where the main topic of discussion was patient centricity, defined as the process of designing a service or solution around the patient through patient engagement. This involved a workshop exercise to determine how patient centricity is perceived and practiced by pharmaceutical organisations.

Feedback from POF survey 2019

Towards the end of 2019, the ABPI ran its annual survey of the POF members to inform their approach for 2020. About half of the POF members responded to the survey. Members perceived the main roles of the POF to be collaboration and sharing of experiences, policy making, advocacy and to improve communication with the pharmaceutical industry. As a result of the survey, the format of the POF meetings has changed to become more interactive and open, prioritising patients with more content on patient and public involvement related to patient organisations.

Members also suggested that the profile of the POF needs enhancing within the ABPI with a stronger online presence and better external communications. Representation of the POF on the ABPI Board was suggested, as was the development of terms of reference for the POF from the ABPI.

Patient centricity

A member of the MS Society spoke about including the patient voice in the work that they do. One of the main goals of the MS Society is to connect communities for a powerful patient voice to inform their work: “We’re led by insights from people affected by MS”, “Nothing about you, without you”. They use the ladder of participation (coercion, educating, informing, consultation, engagement, co-design, co-production) to gauge patient involvement and aim for co-production at the top of the ladder as one of their core principles. In co-production, everyone has something to contribute and everyone is treated as an equal. They have developed a toolkit for staff and MS Society members to guide co-production on projects/services, and have a peer-to-peer co-production group. They also mentioned their “engagement by experience” network input into the development of services, and their Engagement Involvement Empowerment (EIE) strategy and EIE officer.

Challenges to co-production include power imbalances, time and budget, assumptions, role definition and risk and failure. However, the rewards are the building of patient communities and the involvement of MS patients with the design and delivery of services and solutions that they will use and experience.

An employee from Astra Zeneca spoke about the shift from the traditional focus on treatment to a more holistic approach to the care of patients that is embedded in what Astra Zeneca do to shape the whole person experience. This includes coordination of digital services, patient services and partner ecosystems to think holistically about the patient experience. A holistic approach requires constant learning, collaboration with patients and co-production of services. The Fixing Dad series of videos about the journey of a patient with diabetes was used as an example of patient centricity in the work that they do at Astra Zeneca.

There followed a patient centricity workshop involving members of patient organisations and the pharmaceutical industry about patient centric best practice in research, how to work with patients, patient organisations and industry, key challenges and benefits of working with patients, patient organisations and industry, and how the ABPI can support better collaborative work between patients, patient organisations and industry.

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