Engaging with Patients & Consumers as Partners
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Healthcare is undergoing unprecedented change on every front. We are witnessing advancements in medicine, science, technology and data analytics, as well as patients and consumers who are increasingly educated and engaged in their own care.
We recognize that to fully leverage these advances for the benefit of public health, the voice of patients and consumers must be a part of the evolution. By engaging the people who will ultimately stand to benefit from these advances, we unlock a key part of the learning process.
To that end, we work to engage patients and consumers early and often and embed their insights systematically in all that we do.
For example, we invite patients to co-design our clinical trials to help us improve their experience, and ensure their voice is incorporated from trial inception and planning through to completion. We ask patients questions like: “What would make the clinical trial easier?” Or, “How can we make informed consent clearer?”
A patient preference study is another mechanism we use to gather patient insights. These studies help us understand how patients themselves view the trade-offs between certain side effects and the degree of benefit of an investigational medicine. A common question is: “How much risk is acceptable to you for a given treatment benefit?” Using these data from patients as a guide, we can make better decisions on whether a drug development program should continue, and if so, how should it be adjusted. Patient preference studies also allow us to understand the diversity of patient perspectives on benefit-risk trade-offs. Gaining more understanding of how different patients feel can be a stepping-stone toward a decision-making framework that includes patients with different risk tolerances.
Outside a clinical trial environment, we also gather real-world data to understand how a medicine or product is working in the real world.
To continue to engage patients and consumers actively and broadly, we believe we have a role to play in overcoming perceived research and industry barriers to patient engagement, such as cost and complexity. That is why we partnered with the Clinical Trial Transformation Initiative (CTTI) to develop a model, published in Therapeutic Innovation & Regulatory Science, to assess the return on investment from patient engagement.
By closely partnering with patients and consumers, we aim to pave the way towards more people-centric, ethical healthcare inside and outside Johnson & Johnson.