PARADIGM project: 7 months til the end. Are we on track?
PARADIGM is an atypical project by its nature and its duration – very short and most of the tangible achievements are due at the end of the project. The project was built in two phases, the first one to be able to capture the data, identify gaps and see what is missing to make patient engagement in pharmaceutical R&D the norm. The second phase focuses on the creation of tools to facilitate patient engagement for all the stakeholders.
What have we delivered so far?
The consortium is on track with what was planned, and the creation phase is now at full speed. Based on a work aiming to go beyond all anecdotal gaps, we robustly identified what would make the most impact for the patient engagement community. The consortium is currently developing a monitoring and evaluation framework aiming to equip the stakeholders involved in patient engagement with a tool to help them measure the impact of their initiatives. It will be a game changer to bring the patient engagement to the next level.
We are also working on various tools each with different objectives. Here are a few examples of these tools:
- Support the HTA bodies to engage with patients and their representatives during early dialogue;
- Build the capacity and the capabilities of all the stakeholders that want to do more;
- Support the identification of the right patients and representatives for the right activities at the right time.
How is the patient community represented?
Our consortium is composed of 4 patient organisations (EPF, EURORDIS, EATG and Alzheimer Europe) and a foundation working with children and young persons (Foundation San Juan De Deù) that are all committed to engaging their membership in the PARADIGM work. The feedback on the work of the consortium is overall positive and it is always important to remind the patient community, that PARADIGM has a limited lifespan and that it can integrate with like-minded, kindred spirit initiatives such as the Patient Engagement Open Forum 2019.
The patient community is also represented during various activities and discussions happening within PARADIGM. Patient advisors have joined workshops, working groups, and the Open Forum to contribute to the discussion and ensure that the patients’ voice is heard. Their participation enabled the partners to get the on-the-ground experience that patients face in their daily life and therefore include the patient perspective in their work. One of the patient experts explains:
“Through participating in this project, I also learned how a high-level, pan-European project can be run and how a professional engagement with patient consultants can look. To date, the most complex project I have been involved with was the EUPATI expert training. This IMI-PARADIGM project has been quite transparent and well organised, in terms of outlining how it will run with patient input, what the steps are, what the roles and responsibilities are, etc. It is interesting and informative to see what this means, and positive to be on the receiving end.”
Legacy of PARADIGM
In the long-term, PARADIGM will have been crucial to raise awareness and be part of the cultural shift that is happening within the patient engagement landscape. Bringing together patients, pharmaceutical industry, academia, HTA and regulatory bodies is a challenge but it has been proven that it can work well as evidenced by the Patient Engagement Open Forum 2019.
The PARADIGM project will be remembered as the driver of bringing patient engagement in medicines R&D to the next level, towards a reality, and a meaningful and systematic norm in the long-term. But also, a project that united various stakeholders and viewpoints that have managed to merge and move towards a same direction.