There’s a pervasive misconception that pharmaceutical companies are the ‘bad guys’, but how can we shift this public perception? Engaging with patient advocacy is not just about recruitment, it’s a valuable way of building trust among patients.
There’s a pervasive misconception that pharmaceutical companies are the ‘bad guys’, but how can we shift this public perception? Engaging with patient advocacy is not just about recruitment, it’s a valuable way of building trust among pThe image problem associated with clinical trials is especially evident among the diverse populations – such as people from ethnic and racial minorities – whose participation is badly needed. This usually stems from negative experiences, whether these were felt at first hand, discovered through people’s own research, or heard through the proverbial grapevine.
To address this problem, we need transparency. This means putting patients front and centre of clinical trials, and including their voice in the development, implementation and outcomes of each study. Patients should be given full information about the process of the clinical trial they are undertaking, the drug or treatment they will receive, and any potential side effects they may experience from this drug or treatment. It is vital that this information is provided in a way that’s easy to digest, through engaging film, online or print communications using accessible language.
Patient Advocacy Groups (PAGs) are an incredibly useful resource for healthcare companies, giving providers direct access to people who are living with the disease they are targeting. According to Lydia Makaroff of Fight Bladder Cancer and World Bladder Cancer Patient Coalition, PAGs can provide unique insights into the patient experience and quality of life which are crucial metrics for many clinical trials1.
Covering everything from large organisations to small groups run by volunteers, PAGs are an important source of information for people with specific diseases. Their aims generally include providing information and support, sharing experiences, and furthering a disease cure or better treatment options.
Engaging with PAGs is an essential step towards building trust in clinical trials among key demographics. However it’s important that this is not merely a recruitment exercise but a long-term partnership working towards common goals. To achieve this, companies need to start a conversation with PAGs early on, and engage with them at every stage of the drug development lifecycle. They can be consulted during the development stage to evaluate treatment needs and build awareness of the clinical trial, and later to check that the proposed patient communications are appropriate and accessible. A vital step is to keep PAGs in the loop by sharing study results and – for patients involved in the trial – what these results mean for their post-study treatment plan.
The most important thing to bear in mind when engaging with PAGs is that they are made up of people experiencing change. They are often the first stop for patients or caregivers on receiving a diagnosis which may have been devastating. In this frame of mind, understanding a myriad of complex information and finding a relevant and geographically accessible trial are daunting tasks. By engaging effectively with PAGs, sponsors, pharmaceutical companies and healthcare providers can make people’s lives easier at a difficult time, as well as potentially accessing a group of potential patients.
The Absolutely Health team acknowledges and values the role of Patient Advisory Groups (PAGs) and collaborates with clients to establish and sustain these groups. Leveraging our expertise in science communication, we ensure that complex scientific information is conveyed transparently, accurately, and in a manner accessible to both volunteers and associated organisations. We strongly believe that effective science communication will enhance volunteer recruitment in the future.
