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Partnering with patients to deliver true value

Posted by
Stephen Yates, Global Clinical Development & Medical Affairs
29-Mar-2017
UCB’s patient engagement efforts have been cited by the Clinical Trials Transformation Initiative (CTTI) as an example of how pharmaceutical companies can work with patients to address unmet medical needs.

CTTI is a public-private partnership whose mission is to develop and drive adoption of practices that will increase the quality and efficiency of clinical trials. In its 2016 annual report, the organisation highlighted our active leadership in developing new mechanisms to implement patient engagement strategies across the drug development life cycle.

This unique recognition reflects UCB’s ongoing partnership with patients, adapting the CTTI framework to meet our needs. “The result has been that UCB has developed a strategic vision to partner with patients at every step of the clinical development process to identify needs and inform study design and operations,” the report states.

CTTI stresses the cultural shift towards patient centricity and patient value that this has required. It highlights how our company’s strategic vision avails of all patient engagement opportunities, our focus on identifying true and actionable patient insights, UCB’s goal of delivering value to patients, and our appreciation of patients as valued partners.

We very much welcome this recognition of our work in this area. Patient value can become an empty buzzword if not followed by action. Our teams have taken this to heart: we listen to what patients want and adapt our endpoints accordingly.

Ask the patient
For example, in several clinical studies we are using a patient survey, combined with benchmarking data available from a third party, to establish a baseline for patient experience in clinical studies. This will be used to identify patient experience signals that will help us target our efforts to innovate around experience-enhancing solutions that will improve study conduct and lead to more patient friendly study designs.

While patient experience is our primary focus for this pilot, we also expect that the data will support other patient-focused ambitions such as site selection, improving recruitment and retention. Additionally, the survey provides a pathway for patients to opt-in to receive follow up study information in the form of lay summaries.

Deep-dive surveys and interviews of patients are also being used to improve our knowledge of how certain chronic autoimmune diseases affect patients. This will help our teams to understand how patients might experience the demands of participating in a clinical study.

Meeting patient goals
At UCB we are Inspired by Patients. Driven by Science. It is in this spirit that we have committed to partnering with patients as part of the clinical development process. We want to deliver patient value. The only way to do this is to engage with patients at every step of the process to ensure we are working together to meet their goals.

This will allow us to bring better medicines to market faster and in a more sustainable way, helping UCB become a patient-preferred organisation in the process.

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Comment:
Posted by Michael , 2 April 2017

Sounds very encouraging. I have had epilepsy all my life (51 yrs) and I am sure that my therapies could have been better with better record-keeping, healthier attitudes, and better communication. Thanks for what you are doing!