UK Rare Disease Framework was published January 2021. One of the key underpinning themes is: The Patient voice.
Patients, their families, carers, and the organisations that represent them live with the realities of a rare disease every day.
They have a great amount of knowledge and lived experiences to share which can be hugely valuable to policy makers and service providers when designing services for rare disease patients.
In addition the framework also says that:
We will continue to put the patient voice at the heart of its decision making and collaborate closely with patients and patient organisations.
Any commitments will be developed in consultation with patient representatives.
Giving particular consideration to ensuring representation from those whose voices can often go unheard, including patients from Black and Minority Ethnic (BAME) or disadvantaged backgrounds.
The are increasing calls for public participation and engagement in practice and research initiatives. The Patient Voice needs to be at the forefront of any effective collaboration between:
1. The rare diseases community.
2. Health and social care professionals.
3. The life science or pharmaceutical industries.
This collaboration provides the potential for a powerful and dynamic triad which embeds public engagement and involvement in health and social care research and practice.
Different fields of practice will use different methods of engagement with the patient, however bringing together different approaches can result in producing outcomes which can strengthen the findings of a study or initiative. Triangulation or mixed-methods research is an approach which uses more than one kind of method in each study.
Combing the patient’s story with traditional research approaches can provide depth and understanding of the journey to diagnosis, care and support.
Many people living with the effects of a rare disease are challenged by having a physical disability: the addition of psycho-social challenges, may discourage them from engaging in research or health and social care initiatives.
Listening to the Patient Voice can provide deeper understanding of the needs of the the Rare Disease Community.