The 9th Annual Patients as Partners Europe conference was held May 20-21, 2025, in London. This conference focused on integration of patient experience in the medical development process, and discussion reflected the maturing discipline of patient engagement. Key topics included:
- How pharmaceutical companies are embedding structures and processes to support sustained patient engagement, transitioning from patient centricity to integrated patient engagement
- Utilizing Patient Experience Data to advance medicine development
- Reducing patient burden by addressing protocol complexity and acting on patient insights
- Connecting with communities to manage diversity in patient recruitment
- Identifying high-impact activities to speed up medicine development, and establishing true collaborations in patient partnerships
Enhancing patient engagement in the early stages of drug development
Key takeaways
- While there is increasing focus on patient engagement through the drug development process, there are still a need to build understanding of the full value of patient engagement in the pre-clinical and clinical stages of development, and for more robust processes to support insight gathering and reduce burden to the patient community
- A strategic, longer-term approach to patient engagement helps build trust and facilitates effective collaboration that will support study success
Implications
- A collaborative environment, taking into account the patient community perspective, will foster transparency and mutual trust
- Engaging patients through open communication, respect and consistent support results in stronger relationships and positive outcomes throughout the study development
- Measuring the impact of patient engagement initiatives to evaluate the effectiveness and demonstrate value will enable feedback to the patient community and support continuous improvement
- Implementation of best practices involves early and consistent communication, transparent feedback mechanisms, and standardized processes for collaboration
- When looking at processes, there are many co-created tools available such as WECAN RAPP guiding principles for patient contracts (patient friendly legal agreements), or PFMD tools, which can be leveraged – there is no need to re-invent the wheel
Engaging patients through open communication, respect and consistent support results in stronger relationships and positive outcomes throughout the study development
Integrating patient experience and engagement data
Key takeaways
- Patient Experience Data (PED) is increasingly recognized as a valuable element of business, regulatory and health technology assessment (HTA) decision-making. Integrating a patient engagement approach to the design, generation and use of Patient Experience Data is essential for informed decision-making
- Tools like the PFMD PED Navigator help guide how to customize patient engagement activities based on organizational needs and stage of product development
- The effective integration of patient engagement and experience data addresses challenges such as lack of clarity and transparency from regulators, duplication of effort across organizations, and the burden on the patient community
Implications
- Systematic patient involvement in Patient Experience Data design, generation, analysis, and dissemination will create robust data sets to strengthen regulatory and HTA submissions
- Patient engagement frameworks, embedded into standard operating procedures (SOPs), supports continuous and structured patient engagement, leveraging insights effectively, reducing duplication of efforts across the organization and the burden on the patient community
- Strategic integration of patient experience data when designing research studies can enhance patient recruitment and retention, improve overall study design, increase compliance and adherence and provide higher quality data, improve decisions making and support meeting regulatory requirements
Strategic integration of patient experience data when designing research studies can improve overall study design
Patient involvement in health technology assessments (HTAs)
Key takeaways
- The new EU HTA process is complex, involving multiple stages and stakeholders, with patients playing a crucial role in providing input at various stages, including early dialogues and joint scientific consultations
- Challenges include ensuring patient access to information, navigating conflict of interest regulations, and adequately resourcing patient organizations for effective data collection and evidence generation
Implications
- Effective training and capacity-building programs for patient organizations can improve their contributions to data collection and evidence generation
- Involving patients early in the HTA process can enhance the relevance and quality of the assessments
Involving patients early in the HTA process can enhance the relevance and quality of the assessments
Leveraging technology and innovation
Key takeaways
- Innovative solutions like artificial intelligence (AI) can improve patient experiences and access to healthcare
- Utilizing AI to extract text, generalize narratives, identify themes, and tag metadata from various data sources accelerates insights acquisition and streamline data collection and analysis, making healthcare delivery more efficient
- For clinical trials, AI models can predict risk of early study discontinuation, and willingness to participate in studies
- Social media data can provide insights into patient experiences and preferences, especially in fast-moving information areas
- Having a central database that supports use and re-use of patient insights can improve efficiency of Patient Experience Data analysis
Implications
- Investment in AI and other digital tools could enhance efficiency in analysis of patient insights
- Innovative technologies offer potential to improve efficiency of healthcare processes
- Training programs on digital readiness and content automation can prepare teams for future technology use
- A central database that collects and analyzes data from various sources within an organization allows easy retrieval of insights in storage, supporting efficient and data-driven decision-making – incorporating data from patient journeys, foundational insights, protocols & trial material input, route of administration (RoA) preferences, patient preferences, all in addition to clinical data
Implementing innovative technologies can address real-world problems and support better patient outcomes
Multi-stakeholder partnerships
Key takeaways
- Effective multi-stakeholder partnerships are crucial for successful clinical trials, this collaboration among patients, sites, sponsors, and other stakeholders can improve trial design and execution, through measuring the experiences as a patient, trial site and carer, running surveys throughout to track results from changes applied
- Challenges exist in effectively engaging stakeholders (patients, sites, sponsors) throughout the clinical trial process, identifying how to improve communication and information sharing among stakeholders is crucial for successful trial design and execution
- Patients may be involved in design of clinical trials, but their role could be expanded to input on initial priority setting and throughout the R&D process
Implications
- Establishing a feedback loop, such as sharing lay summaries of trial results, can improve the overall trial experience for participants
- Insights from patients can be shared with on-site staff so they are aware and can help support future improvements to enhance the trial process
- Sharing knowledge and implementing best practices of multi-stakeholder engagement cross-pharma, particularly on non-competitive topics, would improve trial efficiency and reduce delays across the industry
Sharing knowledge and implementing best practices of multi-stakeholder engagement cross-pharma would improve trial efficiency and reduce delays
