In recent years, patient and public involvement (PPI) has become an integral part of healthcare research and service design. By including the voices of patients, caregivers and the public, we aim to create more relevant, effective and empathetic health solutions and impactful research. Yet, amidst discussions on improved outcomes and enhanced engagement, one crucial aspect often remains overlooked – the emotional impact of PPI on everyone involved.

The emotional journey of patients and public contributors

For patients and public contributors, involvement is more than just giving feedback or attending meetings. It’s an emotional journey that can be both empowering and challenging:

  • Empowerment and validation: Many participants feel a sense of purpose and validation by sharing their experiences to improve future care. Knowing that their voices can lead to real change fosters a sense of agency and pride.
  • Emotional burden: Reliving traumatic or challenging health experiences can be emotionally taxing. Contributors might find themselves revisiting painful memories, leading to feelings of vulnerability or emotional exhaustion.
  • Hope and frustration: Being involved often brings hope for better healthcare solutions. Yet, when contributions don’t seem to lead to immediate change, it can also result in frustration or disillusionment.
  • Community and connection: PPI offers a unique opportunity to connect with others who have shared similar experiences. This sense of community can be healing and comforting, reducing feelings of isolation.

Being involved in PPI gave me a sense of purpose. Sharing my story meant that my experience wasn’t just something I endured – it became something that could help others and improve care.

Patient and public contributor

The emotional impact on researchers, healthcare professionals and PPI support staff

It’s not just patients and public contributors who are emotionally impacted – researchers and healthcare professionals also experience a range of emotions:

  • Inspiration and motivation: Hearing firsthand stories can inspire and motivate researchers, reminding them of the human side of their work. This can reinvigorate their commitment to making meaningful changes.
  • Emotional weight and responsibility: Knowing the personal impact of health issues can add emotional weight and a sense of responsibility. Researchers might feel pressure to ensure their work lives up to the hopes and expectations of contributors.
  • Professionalism/challenge of balance: Balancing professional objectivity with empathy can be challenging. Maintaining emotional boundaries while staying genuinely engaged requires emotional intelligence and resilience.
  • Differing agendas or motivations/‘mission drift’: PPI contributors can often go off topic, use the opportunity to mention other things that are relevant to them but perhaps not the focus of conversation – this can be hard for researchers and support staff to manage while ensuring people feel valued and listened to.

 

Hearing firsthand from patients about their struggles is incredibly motivating, but it also comes with a weight of responsibility. Their hopes are placed in our hands, and that’s something I carry with me in my research.

Healthcare researcher

One of the challenges is balancing everyone’s input while staying focused on research objectives. Patients bring passion and lived experience, which is invaluable, but as researchers, we have to navigate these discussions carefully to ensure all voices are heard without losing direction.

PPI coordinator

Navigating emotional impacts: What we have learned?

To harness the positive emotional aspects of PPI while mitigating the negative, here are some suggested strategies: 

  • Training and support: Provide emotional support and resilience training for both contributors and professionals. Access to counselling or peer support groups can help navigate emotional challenges.
  • Create safe spaces: Ensure meetings and discussions are conducted in safe, respectful environments where everyone feels comfortable sharing.
  • Debrief sessions and signposting: Make sure time is planned in for professionals to debrief and share thoughts and learning. Where possible, signpost contributors to trusted sources of support.
  • Acknowledge and validate emotions: Recognise the emotional contributions of all participants. Simple gestures of acknowledgment can make people feel valued and understood.
  • Timely feedback: Keep contributors informed about how their input is being used. This helps prevent feelings of frustration and reinforces the value of their involvement.

The emotional complexity of PPI

PPI is about more than just participation. PPI is powerful not just because it drives change, but because it connects people through shared humanity. We need to acknowledge and, if possible, embrace the emotional complexity that comes with truly listening to and valuing people’s experiences. By acknowledging and addressing these emotional impacts, we can create more meaningful, empathetic and effective relationships between PPI contributors, researchers and support staff.

PPI isn’t just about gathering input – it’s about truly listening, valuing and respecting the emotions behind people’s experiences. It’s challenging at times, but it’s also what makes the work so meaningful.

Healthcare researcher

About the authors

Lisa Whittaker

Lisa Whittaker

Research involvement lead at Blood Cancer UK, former PPI coordinator at KCL School of Biomedical Engineering and Imaging Sciences and Cancer Research UK RadNet

Anne Croudass

Anne Croudass

Lead research nurse at Cancer Research UK

Find out more

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This blog is based on a presentation Anne and Lisa first delivered to Health Research Charities Ireland in February 2025.