The Right to Funded Research:

Including Lived Experience at its Heart.

In this the fifth and final instalment of our series unpacking the principles within the Long Covid SOS Bill of Rights, we explore a principle that is pivotal for the Long Covid community and the advancement of medical research: the Right to Funded Research.

Research is the backbone of medical progress. It enables us to understand diseases, develop treatments, and improve the quality of life for those affected. For conditions like Long Covid, the need for dedicated research funding is critical. Without it, we risk leaving millions without answers or adequate care, for this and many other reasons, funding for all types of Long Covid research must be accelerated.

Funded research ensures that scientists and healthcare professionals have the resources to conduct thorough investigations. It allows for the exploration of novel treatments, the development of effective interventions, and the dissemination of crucial information to the public and medical community.

One of the most transformative aspects of Long Covid research to date has been the inclusion of lived experience. People living with Long Covid bring invaluable insights that can shape the direction and focus of research efforts. Their experiences highlight the real world impact of the disease, providing a nuanced understanding that purely clinical perspectives might miss.

Incorporating lived experience into research can take many forms, each providing unique benefits and perspectives. Some of the benefits include:

Patient Advisory Panels: Establishing panels composed of Long Covid patients to advise on research priorities and study designs. These panels ensure that the research aligns with the needs and concerns of those affected by Long Covid.

Qualitative Research: Conducting interviews and surveys to gather detailed personal accounts of living with Long Covid. This approach captures nuanced experiences, shedding light on aspects that quantitative data might miss.

Collaborative Studies: Partnering with patient-led organisations to co-create research projects. This collaboration helps align research objectives with the real-world needs of patients and ensures that the research process respects their insights and priorities.

Community Engagement: Hosting forums, focus groups, and town hall meetings where patients can share their experiences and provide feedback on ongoing and proposed research initiatives. This engagement fosters a sense of community and ensures a diverse range of voices is heard.

Case Studies: Documenting individual patient journeys in detail to highlight the diversity of Long Covid experiences. These case studies provide rich, in-depth insights that inform broader research trends and hypotheses.

Participatory Action Research (PAR): Involving patients in every stage of the research process, from initial design to data collection and analysis. This approach treats patients as co-researchers, ensuring their perspectives directly shape the outcomes.

Lived experience provides a wealth of practical knowledge. Patients can identify symptoms, triggers, and patterns that might not be immediately evident to researchers. This insider perspective ensures that research questions are relevant and that the outcomes are meaningful to those most affected. Additionally, including lived experience can develop a sense of ownership and enablement among patients, as it can have the capacity to transform them from passive subjects into active participants in the search for solutions. This collaborative approach can not only enhance the quality of research but also strengthen the trust between the medical community and patients.

Despite the clear benefits, integrating lived experience into research is not without challenges. Funding bodies and research institutions often have established protocols that may not easily accommodate patient involvement. There can also be reluctance to shift away from traditional, top-down research models. To overcome these barriers, it is essential to advocate for policies that prioritise patient-centred research. This includes securing dedicated funding streams for projects that explicitly involve patient input as well as developing frameworks that facilitate meaningful collaboration.

The Right to Funded Research, with lived experience at its heart, is more than a principle; it is a call to action. It urges us to rethink how we approach medical research and to value the contributions of those who live with the conditions we seek to understand. For Long Covid research, this means not only increasing funding but also ensuring that the voices of patients are heard and integrated into every stage of the research process. By doing so, we can drive forward innovations that are deeply attuned to the needs of the Long Covid community.

The Right to Funded Research is a cornerstone of the Long Covid SOS Bill of Rights. It embodies the belief that research should be inclusive, patient-centred, and properly funded. As we continue to navigate the challenges of Long Covid, now is the time to commit to a research paradigm that honours and utilises the lived experiences of those affected, paving the way for a future where their voices are at the heart of every discovery.