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Research & Change

Understanding overlooked diseases and persistent symptoms requires careful, open-minded research.

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Many patients experience complex or poorly understood health conditions that do not fit neatly within traditional diagnostic frameworks. FPOD supports research that can improve understanding, reveal gaps in care and identify opportunities for better recognition and support.

Our approach brings together scientific evidence, clinical insight and lived experience.

Our Research Priorities

  • Diagnostic uncertainty & delayed diagnosis

    • Understanding why some patients remain without clear answers and how uncertainty is handled across healthcare.

  • Overlapping & co-existing conditions

    • Exploring complexity when symptoms, diagnoses or conditions cross conventional specialty boundaries.

  • Persistent physical symptoms

    • Investigating symptoms that continue despite standard assessment or do not yet have a satisfactory explanation.

  • Healthcare systems & patient pathways

    • Identifying where fragmented services, referral structures or communication can contribute to patients being overlooked.

  • Lived experience

    • Understanding how diagnostic uncertainty, repeated investigation and gaps in care affect patients and families.

  • Recognition & communication

    • Exploring how patients' concerns are heard, interpreted and communicated during clinical encounters.

Current Research

  • Gaslighting in healthcare (Partner: University College London (UCL))

    • Exploring how patients experience dismissal, disbelief or invalidation in healthcare settings, and what this can mean for trust, diagnosis and ongoing care.

  • Exploring patient stories (Partner: University of Birmingham)

    • Using patient narratives to understand complex health journeys, recurring themes and where experiences may reveal gaps in recognition or care.

  • Invalidation during medical consultations (Partner: Rutgers University)

    • Examining how invalidation can arise during clinical encounters and how communication may influence patients' experiences of healthcare.

Research shaped by patient experience

Patients often see the whole journey: the symptoms, referrals, repeated explanations, changing diagnoses, gaps between services and the practical consequences of uncertainty. Those experiences can provide valuable insight into where further research and clinical attention may be needed.

  • Identify priorities

    • Patient experiences can highlight recurring problems and unanswered questions that deserve investigation.

  • Shape research questions

    • Where appropriate, people with lived experience can help ensure studies ask questions that matter to patients.

  • Interpret findings

    • Patient perspectives can add context to research findings and help explain their real-world significance.

  • Communicate learning

    • Working with patients can help make research outputs clearer, more relevant and more accessible.

Research Collaboration

Many of the problems FPOD is interested in sit between established categories. Collaboration is therefore central to our research approach.

  • Universities & academic teams

    • Collaborating on research into diagnostic uncertainty, patient experience and overlooked health problems.

  • Clinicians & specialist centres

    • Connecting research questions with clinical experience and areas of unmet need.

  • Patient organisations

    • Working alongside groups with condition-specific expertise and established patient communities.

  • Interdisciplinary partners

    • Encouraging collaboration across medicine, psychology, public health, ethics, communication and other relevant fields.

We do not want to duplicate good work. Where expertise already exists, our aim is to connect with it, support it and help identify where FPOD can add value.

Sharing what we learn

FPOD aims to share research and emerging learning through formats that are useful to patients, clinicians, researchers and wider healthcare communities.

  • Publications

    • Supporting or contributing to articles, reports and academic outputs.

  • Conferences & presentations

    • Bringing research findings and patient perspectives into professional discussion.

  • Educational resources

    • Translating complex evidence into clear, accessible materials.

  • Website & digital communication

    • Creating a visible home for research projects, updates, findings and future opportunities.

Research is one part of the people behind FPOD

Meet the trustees, founding members and multidisciplinary community helping shape our work.

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