Pharma & Patient USA 2020: Patients is Partners in Clinical Trials

With the overall focus of the Reuters Pharma & Patient USA 2020 conference being the relationship between patients and drug manufacturers, a key topic focused on how companies can form trusting and effective partnerships and collaborative relationships with patient groups and patients as individuals. A particular focus on this area was the clinical trials space, which is one of the most important ways in which patients and pharma companies interact.

Steven Taylor of the Sjogren’s Foundation, which regularly works with a variety of drug companies, says that at this point almost all drug companies have been making some sort of effort to partner with patients. However, there is a lot of variation in what that can look like, and some things that may feel like second nature for the patients themselves may require direct requests and clarification before the companies themselves begin to implement them. Bringing patients into the process early can also greatly magnify the benefit of the collaboration.

Deirdre BeVard of CSL Behring says that for pharma companies an important part of the process of patient partnership is identifying their own blind spots and weaknesses. An example she cited was when a panel of patients were questioned by a group of scientists, and it didn’t go so well because the scientists weren’t asking questions that the patients could easily answer.

Susan Schaeffer of The Patient’s Academy for Research Advocacy said that an important factor to consider is that patients are often coming from a very personal and vulnerable place when discussing their respective disease or illnesses, and these diseases have often had a strong impact on the trajectory of their lives. Patients should be regarded as fellow human beings first and foremost and following up with them is essential for effective communication and partnership. Clarification and transparency is also critical to help patients understand the decisions the company makes and to build trust.

Rose Sellati of Novartis emphasized that communication with patients can’t be a simple “one and done” situation. New findings and changes in an individual patient’s disease progression can easily nullify the usefulness of earlier information. This is particularly important in the context of clinical trials, when it is critical to maintain regular communication until the trial concludes.

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