Identifying representative patients in healthcare: Why – and how – you should communicate a diverse patient voice
At Synthesis, we advocate for placing the patient voice at the core of our healthcare ecosystem. Working with patients allows healthcare industry professionals to understand and learn from their experiences to shape future research efforts to develop healthcare outcomes to meet patients’ ever-changing needs. While patient centricity is becoming a more conventional approach within pharma, ensuring adequate patient representation may not always be prioritised. Historically marginalised groups have been overlooked in medical research. So, if healthcare is to advance on a universal scale, patient engagement demands a deeply inclusive approach.
Here are just a few reasons to consider promoting diversity and representation of patient communities in research and publications:
1. Individual experiences
Every patient will have their own personal experiences and journey, from waiting for an appointment to the type of treatment they are prescribed. Therefore, each individual will encounter unique healthcare challenges, making it imperative to incorporate a variety of patient views within research domains.
2. Cultural differences
Internationally, patient engagement will likely reveal regional differences in individual needs and priorities due to factors such as treatment availability. Furthermore, due to disease distribution, it is important to collaborate with patients across all geographical locations to address a broader range of therapy areas.
3. Equality
Every patient should benefit from the progression of patient-centricity in healthcare, regardless of their demographic. By encouraging diverse patient engagement, future research may accommodate the needs of individuals from a variety of backgrounds and contexts, improving patient outcomes in an all-encompassing manner.
Identifying and recruiting patient representatives
To identify a representative patient community, patient demographics must be clearly defined. These characteristics may include the gender, age, ethnicity, economic status, or education of the patient, just to name a few. It is important that patient engagement incorporates a wide range of these individual characteristics so that the average patient is represented.
A critical part of diversifying patient engagement is simplifying the recruitment process to allow for greater inclusion and mitigating factors such as socioeconomic status or technology that could impact patient contribution. In cases where the patient may be too sick or unaware of their circumstances, it is highly valuable to hear from family members or caregivers so that their experiences are still acknowledged by industry professionals.
An effective way to engage with patient communities is through collaborations with advocacy groups. Patient advocates provide direct support, knowledge, and assistance and are, therefore, acutely aware of patient perspectives and needs. By collaborating with advocates, healthcare professionals can capture patient insights without adding extra pressure to patients. Alternatively, some healthcare organisations, including the NHS, enable individuals to apply for a patient representative role. This type of patient recruitment involves a more thorough application process, requiring the completion of forms and sometimes even an interview. In order to encourage patient engagement, representatives are often offered monetary benefits as a reward for their contribution to the advancement of healthcare. (1)
The role of pharma and healthcare agencies
Following successful engagement activities, pharma companies must commit to elevating and disseminating patient insights throughout the industry to positively impact healthcare systems. That is why, at Synthesis, we are committed to transforming the wide-ranging insights provided by patients and caregivers into accessible forms of communication.
The potential rewards of including diversified patient engagements in research are vast. By promoting inclusive patient views, complex educational resources can be translated into accessible formats for wide-ranging audiences to understand. Furthermore, through enhanced awareness of representative patient needs, patient support and disease management programmes may provide more effective care and assistance across a greater spectrum of therapy domains, impacting healthcare globally.
Our team at Synthesis Health consists of specialist medical writers who share the motivation to boost healthcare outcomes for all stakeholders. Please contact us at info@synthesishealth.co.uk to learn more about how we can support your patient advocacy and representative patient engagement activities.
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