Over the past decades we have developed an intuitive understanding that better patient involvement in clinical trials delivers better patient outcomes.
Patient organisations and their representatives offer unique insights through their lived experiences, but are often under-represented in medicine discovery, development and discussion. Celgene, with its Patient Partners is now seeking to redress this balance with the ChangeMakers programme.
But what is a ChangeMaker? A ChangeMaker is an individual, organisation or movement that supports and advocates for improvements in the world around them, using their lived experiences and expertise as the basis for this change.
Putting patients at the heart of everything we do is not only one of our company values, it is in our very DNA as a business
The Celgene ChangeMakers mission is to recognise and amplify the voice of patient organisations. We believe that by working with patient organisations to qualify and articulate the key opportunities for patient involvement we can provide a catalyst for change.
To provide an evidence base for the need for change, a Steering Group comprised of Celgene and patient organisation representatives reviewed the evidence and identified the key areas where patient organisations demonstrate the most value in the delivery of good healthcare.
The ChangeMakers Goals reflect the key areas where increased patient engagement can lead to the most positive changes for healthcare delivery. Celgene and patient organisation representatives reviewed evidence from over 100 clinical studies and other existing programmes to better understand and demonstrate the value of the patient voice. This evidence formed the foundation for the Celgene ChangeMakers Goals.
The Goals provide an evidence-based framework for achieving the four principle ChangeMakers Visions:
- All clinical trials conducted in Europe will incorporate the patient perspective as early as possible. They will be designed and developed in partnership with patients and patient representatives, ensuring the real-world concerns voiced by patients are at the centre of scientific research
- More patients to be aware of and participating in biopharmaceutical clinical trials across Europe
- Patients have access to the right treatment and care at the right time
- Every patient is empowered to make decisions related to their own health and care through active participation and increased understanding
“Putting patients at the heart of everything we do is not only one of our company values, it is in our very DNA as a business,” said Mark Alles, Chief Executive of Celgene. “ChangeMakers is a programme that strives for constant improvement and change. A Celgene ChangeMaker is never satisfied with the status quo, or resigned to accepting things because effecting change may be too complicated or take too much time.
“A ChangeMaker is an individual, organisation or movement that supports and advocates for improvements in the world around them, using their lived experiences and expertise as the basis for this change. We wanted to recognise this behaviour and its impact with our patient representative attendees, providing a forum during this year’s Summit to celebrate achievements to date and a framework to increase the visibility and voice of patients in the future.”
The ChangeMakers Goals were launched to over one hundred patient organisations from across Europe for the inaugural ChangeMakers Summit, part of the Celgene Patient Advocacy Framework, Patients’ Partners. This year’s Summit then saw not only patient representative delegates, but all of Celgene’s Senior Management team, led by Mark Alles, sign up to the Goals.
Once the Goals were officially launched to the delegation, the focus of the Summit then considered what actions are needed to achieve the Goals. Commitments also came from Celgene Senior Management on the steps the company will take to ensure patients feel more empowered and engaged in our activities and in their own health. To support this change and progress, the Summit also included capability sessions delivered by Celgene to share knowledge and insights with delegates from topics ranging from effective communications to building high impact teams.
The Goals are just the first step on the journey – an evidence-based framework for change and progress. Areas of joint responsibility for working together to secure broader commitments by listening to and actively involving the patient voice will be identified. Celgene ChangeMakers has created a powerful community of patients and patient organisations who are dedicated to improving the patient voice across the patient pathway. We will continue to work with our Patient Partners and ChangeMakers to uphold the Goals and our commitment to achieving them.
“The Celgene ChangeMakers programme is just the beginning,” said Anita Atema, Executive Director for Patient Advocacy for Europe and International Markets. “We now have our vision for change and concrete steps to get there. Now we need to make a concerted effort, with our patient partners, to keep up the momentum and ensure patients’ voices are heard as they should be.”