From INSIGHT to IMPLEMENTATION
WHAT CHANGED?
What changed because patients were involved?
Patient involvement should lead to change
Listening is not enough
Across healthcare and research, patients and caregivers are increasingly
invited to share their experiences, perspectives and priorities.
But collecting patient insight is not the same as creating impact.
The real question comes afterwards:
What happened because patients were involved?
– Did a decision change
– Did a process improve?
– Was something designed differently?
– Did patients remain involved when the solution was developed?
At PiCC United, we believe meaningful patient involvement should create a visible path
from insight to implementation — and from implementation to impact.
INSIGHT → PARTNERSHIP → IMPLEMENTATION → IMPACT
Three Pathways to Impact
Three different examples. One common question: What changed because patients were involved?
01
02
03
LISTEN DIFFERENTLY
WORK DIFFERENTLY
DESIGN INVOLVEMENT DIFFERENTLY
Insight → Evidence → Action
|
What needs to change? |
Perspective → Co-creation → Usable change |
Can we change the question? |
Participation → Recognition → Sustainable partnership |
Can people actually stay involved? |
Developed with / In collaboration with:
PiCC United · Lundbeck A/S · Patient-Led Working Group · Patients · Caregivers
Developed with / In collaboration with:
PiCC United · PCSIG · MediPaCe · University Hospitals of Morecambe Bay NHS Foundation Trust · Patient Contributors
Shared Commitment to Public Involvement in Health and Social Care Research · Public Contributors · Participating Partner Organisations
LISTEN DIFFERENTLY
How can lived experience help identify what needs to change in clinical trials?
Patients and caregivers told us that clinical trial participation is not only a medical journey. It can also bring emotional strain, uncertainty, practical disruption and challenges that are often overlooked.
The QUIET Study was developed by PiCC United as a qualitative, patient-led study to explore these experiences across the clinical trial journey.
Importantly, patients and caregivers were not only research participants. A patient-led working group helped shape the research questions, validate emerging findings and contribute to the development of recommendations.
WE HEARD
- Support gaps
- Communication gaps
- Missing human connection
WE MOVE TOWARDS
- Whole-journey support
- Continuous communication
- Whole-person design
The insight did not stop with identifying the problem.
It helped define where trial design and participant support need to change — moving from fragmented support towards a more continuous, communicative and whole-person approach.
Emerging findings — work ongoing.
WORK DIFFERENTLY
How can lived experience help us design healthcare differently?
For healthcare professionals, a blood test may be routine. For the person having it, the experience can be very different.
For some patients, conventional blood sampling can create significant anxiety — and can even become a barrier to accessing essential health monitoring. Through our work with PCSIG, PiCC United contributed to the development of Abigail’s story before filming — bringing the patient perspective into the concept, identifying the questions and issues that mattered, and reviewing the content and script.
Our role was not to tell Abigail’s story for her. It was to help create the space for the patient perspective to shape how the story was told.
STANDARD QUESTION
How do we take the blood sample?
PATIENT PERSPECTIVE
What does this experience actually require from me?
DIFFERENT QUESTION
How can we make blood testing accessible to this person?
DIFFERENT APPROACH
Reasonable adjustment · Patient-centred sampling · Better access
WHAT CHANGED?
Sometimes changing the question is what makes implementation possible.
DESIGN INVOLVEMENT DIFFERENTLY
Public involvement is often measured by what we can see: a meeting, a workshop, a review or an advisory board.
But the meeting is rarely just the meeting.
Participation can also involve preparation, reading, emails, unfamiliar technology, payment administration, follow-up — and sometimes the emotional work of revisiting difficult lived experience.
TIME
Preparation · reading · admin · follow-up
ACCESS
Technology · platforms · accessibility
EMOTIONAL LABOUR
Sharing lived experience · reflection · recovery
EQUITY
Who can actually afford — practically, financially and emotionally — to stay involved?
WHAT CHANGED?
Instead of only asking:
“How do we involve more patients?”
We also need to ask:
“Have we designed involvement so people can actually stay?”
Meaningful involvement is not only about opening the door. It is about creating conditions that allow people to remain in the room.
The “What Changed?” Test
Before calling patient involvement meaningful, ask five simple questions.
They are designed to help teams move beyond participation
and consider whether patient involvement actually influenced what happened next.
01 — WHAT DID WE HEAR?
What did patients and caregivers actually tell us?
Was the insight clear enough to act on?
02 — WHAT CHANGED?
What decision, design, process, communication or practice changed as a result?
03 — WHO STAYED INVOLVED?
Were patients involved in developing the solution — or only in identifying the problem?
04 — WHAT DID PARTICIPATION COST?
Did we consider time, accessibility, technology, emotional labour and financial burden?
05 — HOW WILL WE KNOW?
How will we measure the difference — and report back to the people who contributed?