As part of our series to help the patient engagement community get to know one another, we spoke to Begoña Nafría Escalera, Patient Engagement in Research Coordinator, Hospital Sant Joan de Déu, Barcelona
I spoke about the Share4Rare platform, funded by the European Commission to facilitate the interaction of families with a child suffering from a rare disease. This project is designed to promote clinical data sharing with the aim to increase scientific knowledge of the disease and help to setup research projects to study new therapeutically options.
My presentation addressed the importance of patient involvement from the early phases of research; the need to create patient-centred projects; and the contribution all stakeholders can make in working for patients.
I introduced the Patient Engagement Quality Guidance to offer the audience a tool they can use in their patient engagement work. The seven quality criteria are very useful when considering the broad concept of patient engagement along the lifecycle of medicines.
What was the reaction to your presentation from conference attendees?
They were aware of the necessity to involve patients in their activities, but sometime there are gaps in terms of the methodology and legal aspects of how to do it.
Patient engagement is not about performing activities with patients; it needs to be understood as a collaborative participation of patients in the different stages of drug development. They can be active. They can have voice and opinion and help to improve the quality of projects.
Many pharma companies now have at least one professional dedicated to the role of “patient advocacy” in the company. Despite that, sometimes this is not enough as big companies perform a large number of projects. Usually when this position is connected to the Medical Department the meaning is connected with the concept of Patient Engagement that we understood in the project PFMD.
The Quality Guidance was welcomed by the audience and when they learned that this is a collaborative project with pharma companies they were more interested.
Tell us about the project in which the guidance will be used?
KIDS Barcelona is the Young Persons’ Advisory Group of Sant Joan de Déu Children’s hospital. This is the scientific youth council that helps us with various research projects our institution is working on in the fields of clinical trials and innovation.
The Guidance will be used in all these projects with two main purposes. First to assess projects and try to improve the level of patient participation. And second, in projects led by us, to design the right patient engagement activities.
Working with paediatric patients requires specific skills and methodologies, but this is feasible along the whole process of drug development. The Guidance will be very useful tool to help us to plan new activities and to learn from the previous ones.
How long have you worked in patient engagement and what has changed in the field over this period?
I have worked in PE for eight years and have participated in various projects including Kids Barcelona and eYPAGnet (European YPAG network) that is recognised by EnprEMA (European Networks of Paediatric Research of EMA).
We are working very hard to train young advocates and to achieve their participation along the lifecycle of medicines. For example, we have close collaboration with EMA to define the process of patient engagement in their activities.
I envision a new landscape for the paediatric drug development in which their participation will be mandatory, to ensure that their needs and preferences are included. If we don’t involve children in our activities its will never consider the features and expectations of children and young people.
How has working with PFMD helped reach your patient engagement goals?
PFMD is the first standard tool to design and assess patient engagement initiatives. The seven criteria provide a guideline for designing our projects. The collaborative approach of PFMD with all the stakeholders is very positive. This is very useful in my daily work, where the initiatives that we are performing about young patients’ engagement need to be designed with this broad perspective.
What are your priorities for the year ahead?
The next year will be amazing. One project that I want to emphasize is the PARADIGM project funded by the Innovative Medicines Initiative. The goal of PARADIGM is to develop a set of comprehensive tools and practices for patient engagement, along with metrics that will measure its impact in an objective and standardized way.
There are plenty of new challenges ahead. Success is only feasible with the patient’s involvement!
Are you interested in exploring PFMD’s Patient Engagement Quality Guidance? You can easily do that now. Just click here for more information. Are you interested in piloting this Guidance? Contact us now.