As the pharmaceutical industry continues its pursuit of groundbreaking therapies, collecting insights from patients and caregivers throughout research and development is not just important, but critical.

Only patients and caregivers can truly understand the nuances of their disease onset, severity and the profound impact on their physical and mental health.

Their first-hand accounts provide a depth of understanding extending far beyond clinical data or theoretical models.

For example, patients and caregivers provide an understanding of essential factors including preferred routes of administration, disease burden, and how it impacts their daily routines and overall quality of life.

Patients can have differing priorities from established endpoints. Consider the case of spinal muscular atrophy (SMA), a genetic disorder causing muscle weakness and atrophy.

While typically healthcare professionals prioritise improving foot movement, parents of children with SMA place greater emphasis on movements that foster independence, such as the ability to feed themselves.

This example highlights the importance of patient and caregiver insights in shaping priorities and aligning efforts with the true needs of those affected.

Placing patients at the heart of healthcare not only improves patient outcomes but also adds significant value to pharmaceutical companies, with patient-centric practices increasing the chance of product launch by 19%.

The benefits of patient insights span the entire product life cycle offering a win-win scenario for both patients and pharmaceutical companies.

Early incorporation of patient insights is crucial for understanding their needs, preferences and priorities. This information guides decisions on drug formulation, delivery methods and even decisions on which therapeutic targets to invest resources in.

In clinical trials, patients can identify which treatment outcomes are meaningful as well as the feasibility of clinical trial protocol.

Their insights can tailor trial designs to be more appealing and accessible, improving participant recruitment, retention and diversity.

Early involvement aids successful clinical trial enrolment – which is often a make-or-break obstacle for many companies – and can accelerate product launch by 2.5 years, generating a return on investment greater than 500 times the initial cost for patient engagement activities.

Patient insights support product positioning and marketing, ensuring that any materials developed resonate with patients and the broader community. Disease education should be co-created to suit the unique needs of patients, fostering better understanding and capacity to manage their health.

Patient and caregiver insights can significantly help with disease education to inform, educate and empower patients and their caregivers.

The aim is to increase capacity and competency to manage health and support patient activation, self-management and share decision-making, to ultimately improve treatment adherence and outcomes.

The pharmaceutical industry has become more rigorous with collecting patient insights systematically and using them to shape their development programmes.

However, ensuring patient insights can have a meaningful impact can hinge on the strategies used to gather them.

The following considerations outline guiding principles for insight collection:

1. Involve patients early and continuously: Involving patients from the outset and maintaining ongoing communication throughout is crucial. Hosting regular advisory panels composed of patients, caregivers and advocates allows for continuous, reciprocal feedback.
2. Engage with patient caregivers: Caregivers are often overlooked in the insights-gathering process. However, they accompany patients through every step of their disease journey and have valuable insight into the progression of symptoms and impact of disease and treatment.
   Research shows that 92% of caregivers either lead or actively participate in discussions with doctors on behalf of their patients.
   Over half of patients (52%) depend on caregivers to make healthcare choices for them, while an additional 30% consistently consult their caregivers before finalising treatment decisions.
3. Partner with patient advocacy groups: Strategically collaborating with patient advocacy organisations grants long-term access to invaluable patient perspectives.
   When patient communities are recognised as strategic partners and brought along the journey of developing new treatments, clinical trial retention and recruitment, launch success, treatment access and adherence also improve.
4. Diverse representation: Gather insights from a diverse range of patients representing different demographics, backgrounds and experiences. This helps to capture a comprehensive understanding of patient needs, preferences and challenges.
   Use accessible formats, language options and culturally sensitive approaches to ensure patients feel comfortable and empowered to share their experiences.
5. Multimodal data collection: Employ qualitative methods such as interviews, focus groups and observations, for in-depth understanding and context, and quantitative methods to substantiate findings and identify trends.
   Incorporating patient-reported outcomes in clinical trials will also enable researchers to capture a comprehensive evaluation of treatment effectiveness.
6. Digital tools and platforms: Leverage online surveys, mobile apps and social media platforms to reach a broader audience and gather real-time feedback from patients, enabling participation from individuals who would otherwise be excluded, such as those living in remote areas, far from specialist centres.
   While digital routes can be inclusive for some, other methods should be considered for audiences that are not as tech-savvy or have limited access to technology.
7. Timing and context: Gathering insights during key milestones in the patient journey, such as diagnosis, treatment initiation, or follow-up care, can provide valuable insights into patient experiences, emotions and needs at different stages of their healthcare journey.

As awareness of the power of patient insights increases, the landscape is also rapidly evolving with promising trends and innovations.

Digital health technologies, such as mobile apps, wearable devices and remote monitoring tools, are revolutionising the collection of patient insights, enabling continuous, real-time data collection outside of traditional healthcare settings.

Online patient communities and social media platforms offer rich sources of patient insights, as individuals connect, share experiences and seek support from others.

AI and machine learning techniques are being increasingly used to analyse patient data to identify patterns and correlations that may not be apparent through traditional analytical approaches.

However, AI should not be a replacement for engaging directly with patients, and companies should be aware of the potential biases exacerbated by AI, caused by reliance on incomplete data sets where minorities are underrepresented.

By embracing these trends and strategies, and viewing patients as partners in healthcare decision-making, the life sciences industry can make more insightful and informed decisions, and ultimately improve patient outcomes. 

Claire Long is Managing Director of Communications at 90TEN and Simon Stones is a Medical Communications Specialist at Envision Pharma