What Is Patient Co-Design?
Patient co-design is a way of building medicines, trials, and health materials with patients rather than for them, where patient experts help lead the work from the first brief, not review it at the end.
In drug development, co-design means people living with a condition shape the questions a study asks, the language a trial uses, and the materials patients receive, as partners with real authority over the output, not as a feedback panel consulted late. It is the difference between asking patients "do you like this?" and asking them "how should we build this in the first place?"
Patient co-design vs. advisory boards vs. focus groups
These terms get used interchangeably. They are not the same, and the difference is where both the value and the credibility sit.
| Approach | Who holds the pen | When patients are involved | What you get |
|---|---|---|---|
| Focus group | The agency | Once, to react to stimuli | Opinions on a near-final asset |
| Advisory board | The sponsor | Periodically, to advise | Guidance the team may or may not act on |
| Patient co-design | Shared with patient experts | From the first brief, throughout | An output patients helped author |
Co-design is not a compliance step or a tick-box. When patient experts co-lead, they surface what a focus group never reaches: the daily realities, emotional triggers, and practical barriers that change whether a trial recruits or a campaign lands.
How patient co-design works in practice
A typical Merakoi co-design engagement moves through four stages:
- Match. We pair the project with patient experts from our network of 400+ people living with a condition (or caring for someone who is), across 60+ diseases. The right expert is often a community leader who has spent years close to the experience.
- Co-lead the design. Patient experts help build the discussion guide, the workshop structure, or the content brief from scratch. In our rare-disease recruitment work, a patient expert co-led the research itself, not just reviewed it.
- Run the work. Interviews, co-design workshops, or content creation, with patient experts embedded as partners throughout.
- Translate to action. We turn lived-experience insight into specific changes the clinical, regulatory, or brand team can implement.
What patient co-design delivers: three real examples
Rare-disease trial recruitment that finally understood the patient. A biopharma company preparing a Phase 3 trial in prurigo nodularis, a rare and debilitating skin condition, could not see why recruitment was so hard. A patient expert living with the condition, and founder of a patient organisation, co-led research across five countries (three in the EU, two in LATAM). The work surfaced travel burden, time commitment, and language barriers the clinical team had not anticipated, directly reshaping how the trial was communicated and how participant burden was reduced.
A launch campaign that performed 10x better. A global pharma team launching a multiple sclerosis treatment knew their clinical messaging was not connecting. Patient experts living with MS were embedded as co-designers from the first brief, shaping tone, message, and channel. The co-created content outperformed the team's benchmarks by 10x. Patient co-creation became standard practice for the brand thereafter.
A communications playbook that anchored a 3-year R&D programme. A medtech company entering clinical trials for the first time had no patient-communications playbook. Five patient experts, including trial-experienced survivors, co-wrote one across three structured workshops. It became the cornerstone of the company's R&D communications for the next three years.
See more patient co-design case studies →
Why patient co-design matters now
Regulators increasingly expect demonstrable patient involvement: the EU's evolving evidence standards, FDA Patient-Focused Drug Development, and Joint Clinical Assessment all point the same way. But the stronger reason is simpler. Work built with patients performs better. It recruits, it resonates, and it earns trust. Co-design is how that gets done credibly, at the level of co-leading, not consulting.
Frequently asked questions
What is patient co-design in clinical trials?
Patient co-design in clinical trials means patient experts help shape the trial, its materials, communication, and participant experience, as partners from the start, rather than reviewing decisions already made. It improves recruitment, retention, and relevance.
How is patient co-design different from a patient advisory board?
An advisory board advises a team that retains control of the output. In co-design, patient experts share authorship of the output itself: the discussion guide, the playbook, the campaign, from the first brief.
Who are "patient experts"?
People living with a condition, or caring for someone who is, who bring structured lived-experience expertise. Merakoi's network includes 400+ patient experts across 60+ diseases; many are also patient-organisation founders and advocates.
What does patient co-design improve?
Trial recruitment and retention, the relevance of market research, the resonance of educational and campaign content, and regulatory evidence of patient involvement.
Where can I see examples of patient co-design?
See Merakoi's case studies in rare-disease trial recruitment, multiple sclerosis campaign co-creation, and clinical-trial communications playbooks.
Considering patient co-design for a trial, study, or campaign?
Related: Patient Experience Panels · Patient-Led Market Research · Patient Testing Panels
