In early June, we celebrated Patient Advocacy Organization (PAO) Action Week (June 9–13, 2025), a moment dedicated to honoring the tireless efforts of patient advocacy organizations from rare disease champions to advocates for chronic and acute conditions. These organizations bring lived experience, community insight, and essential patient voices to the table, ensuring research reflects real-world needs and priorities.
At Leapcure, our core belief is that patient advocacy is the key to transforming clinical research into something truly meaningful. When advocacy partners and research teams come together, studies become more inclusive, relevant, and impactful from the patient perspective.
Why advocacy matters:
- Study designs shaped by patients
Advocacy leaders ensure that protocols and participant materials speak to real needs removing barriers and boosting inclusivity. - Building trust and access
Patient groups foster trust and engagement, helping trials reach the right participants and populations. - Amplifying lived experience
Through webinars, podcasts, and community events, advocates ensure that patient voices are heard—and acted on.
We’re now turning our focus to Patient Partnership Week 2025 (June 30–July 4) – a free, global series of events hosted by the Patients Association in the UK that explores how genuine collaboration with patients leads to fairer, more responsive health systems.
What’s on the agenda?
- Transforming outpatient care through shared decision-making
- Breaking down barriers to equitable care
- Making digital innovation work for everyone
- Working together for change: a conversation with Sir Jim Mackey
- Patient power: energising the 10‑Year Health Plan through patient partnership
- Championing patient voices in healthcare campaigns
What this week means for advocacy in research
- From tokenism to co-ownership
Patient Partnership Week calls for true alignment inviting patients into governance and design, not just feedback. Leapcure’s model echoes this: we embed patient input from concept through execution. - Technology must serve patients
Sessions on equitable digital tools remind us to prioritize usability and accessibility something we integrate into our digital advocacy and outreach workflows. - Transparency transforms care
Events like “Working Together for Change” spotlight how shared decision-making builds trust, essential when designing trial protocols or consent forms.
Your role in this movement
Join an event:
Register for sessions here: Patient Partnership Week 2025
Learn and share:
Attend a session and share a reflection on LinkedIn or within your team about how it informs advocacy and trial engagement efforts.
Start a conversation:
Use insights to spark conversations with your study teams what changes in consent, outreach, or design could better reflect patient needs?
Connect with advocates:
Reach out to your partner groups to discuss what these themes mean for them and how they want to collaborate more strategically.
Looking ahead
By embedding patient partnership into everything from protocol planning to digital tools and outreach, we can:
- Honor real experiences, incorporating patient input at every step so trials reflect what people actually go through.
- Empower participants, giving them a real voice and sense of ownership in the research process.
- Ensure relevance, centering study design on outcomes that matter most to patients like daily quality of life, ease of participation, and communication that feels personal.
When trials feel genuinely patient-centered, participants report feeling heard, supported, and more connected to the mission. That human impact is what we strive for.
PAO Action Week reminded us why advocacy matters. Patient Partnership Week challenges us and our clients to deepen engagement, embed co-creation, and design research that reflects real lives. Let’s use this week as a catalyst for tangible change.
Together, let’s make every study patient-centered by design from Day 1.
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