Rethinking youth engagement
Estimated reading time: 8 minutes
How pharma can meaningfully invest in the next generation of advocacy
About five years ago, it seemed to me that ‘youth engagement’ had become fashionable in the patient-advocacy landscape. The logic was compelling: involving young adults in advocacy and research would make the field more sustainable, diverse and forward-looking. Pharmaceutical companies, research funders and patient groups all wanted to connect with the next generation of patient leaders. Some initiatives made a real difference. Many were well-intentioned yet largely symbolic.
When I worked at EURORDIS, we tried to respond to interest from the community to better include young people living with a rare condition. Success came mostly when we had a clear purpose, such as with theRare2030 young citizensand when the Rare Disease Dayyoung ambassadorswere integrated with their national campaigns.
Many of the company-sponsored youth initiatives quietly fizzled out. After speaking with several companies and patient organisations that have invested in youth engagement, I don’t think that young people lack interest or that companies lack sincerity. Rather, many programmes didn’t succeed at designing activities that would achieve the common goals of the sponsors and the participants.
We should start by re-examining the business case for youth engagement.
Why renewal matters
Across patient organisations, particularly in rare diseases, leadership is aging. Many of the groups that have shaped the advocacy landscape were founded by parents of affected children. Decades later, these founders are looking for successors, but the pipeline is thin. A survey1of health charity boards in the US suggests that only around two percent of board members are under the age of 35. Without new advocates stepping in, institutional knowledge and influence could dissipate just as the need for patient partnership in research and healthcare design continues to grow. This is not just a problem for patient groups it’s a long-term issue for industry who depend on having powerful advocates to push for improvements to care pathways and patient access.
The missing voices in research and design
The perspectives of 18–25-year-olds remain largely absent from the structures that shape care and research. Many advocacy models were built around paediatric care, where parents acted as primary advocates. When those young patients become adults, they often find few opportunities to participate directly. Studies2 have shown that in many health research contexts, only a small fraction of participants are under 25. Their absence matters because their experiences differ fundamentally from those of older adults and children. They are navigating independence, education, employment, relationships all while managing conditions that began in childhood. Their insights into transition, digital health and daily management could profoundly improve how services are designed, yet those insights are rarely captured. We need to remember as well that young adults are using lots of their energy to adapt to their life changes and won’t necessarily be as proactive at getting involved in advocacy opportunities as their older counterparts.
The high-stakes transition to adulthood
For people living with rare diseases, the transition3 from paediatric to adult healthcare is one of the most fragile stages of the patient journey. Paediatric systems tend to be multidisciplinary and family-centred, while adult systems are often fragmented and less personalised.
Gaps in information and limited understanding of rare diseases among adult specialists all contribute to poorer outcomes during this phase. Newly independent patients, meanwhile, face practical challenges: managing medication schedules, navigating insurance, and balancing health with education or work, often without their parents at their sides to oversee their compliance with care rituals.
Young adults report being dismissed4 or undertreated when presenting to emergency care, often because clinicians lack access to their records or understanding of their disease. The result is not only personal distress but a systemic loss of trust.
A changing demographic
The urgency of this issue is growing. Advances in care mean that more people with childhood-onset conditions are living well into adulthood. Cystic fibrosis5 is a great example of a condition that, thanks to better treatments, has evolved from being a child’s disease to a lifelong condition. A regional study6 in Italy found a threefold increase in the number of people with rare diseases surviving into early adulthood over a ten-year period. Data from the European Cystic Fibrosis Society show a similar pattern: a 60% increase in adults living with cystic fibrosis over a decade. The majority of people with cystic fibrosis in France are now adults.
These demographic shifts demand a corresponding shift in advocacy and engagement strategies. Young adults are not a niche population—they are an emerging majority within many disease communities.
How are we going to ensure that our advocacy is as focused on the needs of this population?
How to make the next generation youth programmes work better—learning from our mistakes
In my judgement, there are some patterns on why some of the earlier programmes disappointed their sponsors:
Limited opportunities for impact
At times, these programmes become a talking shop. Even if this information is used by the sponsor to build up better evidence, discussing issues without real avenues to act leads to frustration and disengagement from the perspective of the advocates.
Unclear objectives
A number of programmes were launched without a well-documented purpose, limiting both meaningful evaluation and the ability to identify the advocates most likely to benefit. This issue was exacerbated by the frequent gap between the original project champion and the sponsor staff subsequently responsible for delivery
Training focused on information, not skills
Typically, these projects focused on developing knowledge about the medicine’s development lifecycle. That’s essential, but information alone doesn’t prepare young people for advocacy. Practical training and experience in writing, speaking and influencing will better build confidence and ensure impact.
Not connecting to the right networks
Youth cohorts often focused inward, building community within the group but not connecting participants with the wider ecosystem of researchers, advocates, policymakers and industry stakeholders. The young adults need to be supported to integrate into the established ecosystem to have an impact.
What effective programmes have in common
The good news is that pitfalls are avoidable. With clearer intent and better structure, youth engagement can evolve from an experiment to a sustainable pipeline of patient leaders. Here are my suggestions:
1. Define clear goals with specific outcomes
Before launching any initiative, define what it is trying to achieve. This sounds obvious, but it’s really hard to do. Is the goal to have more young voices in your advisory boards? Increase the number of active advocates in a disease area or geography? Deepen the connection between your company and high potential advocates? Clarity allows for better recruitment, expectation-setting and evaluation.
2. Experiential learning and mentoring
Advocacy is learned by doing. Offer young adults the chance to participate in real-world projects. This can include reviewing trial protocols and contributing to awareness campaigns but also presenting at events, developing advocacy toolkits and speaking with industry. Pair them with experienced mentors who can provide feedback and guidance and focus on training that builds skills not just knowledge.
3. Prioritise external networks over peer support
While community among peers is valuable, true impact comes from connecting young advocates with professionals across the system. Facilitate introductions to clinicians, researchers and policy experts. Help them build credibility and relationships beyond their cohort.
4. Opportunities for visible contribution
Empower participants to speak, publish and lead. Tangible results reinforce that their perspectives matter. It also helps them to be visible and have a profile that helps them get a platform as well as the usual suspects.
Moving forward
Pharma companies have a pivotal role to play in rebuilding youth engagement on stronger foundations. The sector already recognises the value of patient insight in research and innovation—the next step is ensuring those insights represent every generation.
Investing in young advocates is not a public relations exercise, it is a long-term strategy for sustainability and diversity. These individuals will shape the future of patient partnerships, and the companies that support them now will benefit from deeper, more authentic relationships for years to come. It should mean better advocacy for access to speciality care for young adults.
If the first wave of youth engagement was about enthusiasm, the next phase must be about determination. It takes thought, time and resources to execute a youth programme well. The age range you should be working with and the opportunities you design for them needs to align with the programme goals and the participants aspirations. If we commit to getting it right, youth engagement can evolve from a hopeful experiment into a decisive force for better care, stronger advocacy and smarter research.
Connect with Michael
References
[1] trustees.aha.org/system/files/media/file/2019/06/aha-2019-governance-survey-report_v8-final.pdf
[2] pmc.ncbi.nlm.nih.gov/articles/PMC10165585/
[3] pubmed.ncbi.nlm.nih.gov/35626888/
[4] pmc.ncbi.nlm.nih.gov/articles/PMC9923546/
[5] pubmed.ncbi.nlm.nih.gov/35850286/
[6] pmc.ncbi.nlm.nih.gov/articles/PMC6210512/
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