The Lived experience!!

The person diagnosed with a rare condition, provides a unique ‘insider perspective’, gained from a unique lived experience. The physical, psychological, and social effects is often further impacted by the wider intersecting experiences of economic, ethnic, and political challenges.

Like the author, Dr Sondra Butterworth, there are researchers, with lived experience, who have developed into the role of informal research advocates. With the need to understand, the clinical aspects of their rare condition. This can be termed as, ‘insider knowledge‘, which can produce an authentic interpretation of the rare disease experience. 

Researcher advocates with this ‘insider knowledge’, can be advantageous to the research design process.  Offering the authenticity that a purely clinical practitioner-researcher may lack. However, it is important to be clear about the research advocate’s role, and to acknowledge that subjectivity exists, and that there is the potential for bias!  That said, it mut be noted that the dynamics between this ‘insider/outsider position’, provides any research team or service provider, with an opportunity to gain valuable insight into the diagnostic journey.  

Research design: clinical knowledge vs real world evidence, from lived experience.

Traditionally, research was based upon two paradigms, which included quantitative and qualitative methodologies. Quantitative research is usually objective in design, with a focus on deductive logic in the research procedure. For example, the clinical researcher, designing a study, may adopt an approach that is purely quantitative in nature. The research participant under investigation, may be seen from a purely objective position. The researcher gives prominence to the outcomes that can be measured statistically, with a belief in the robustness of the analysis. When applied to clinical study design, this objectivity is vital when life changing drug therapies, are being developed.

In contrast, qualitative approaches are traditionally focused on inductive logic and are more subjective in design. This is when, researchers attempt to draw a conclusion, from a series of specific observations. These are then developed into a more general theory. This data collection method, often includes,  the use of surveys, case studies and interviews. This resulting data set, is interpreted by the researcher. This perspective is one in which the researcher seeks to understand the social phenomenon from the participants

STOP and THINK when interpreting the data set!

RESEARCH DOES NOT TAKE PLACE IN A VACCUM. There is always an impact on the research participants. 

So, when interpreting qualitative data sets, it is important that the research team does not make assumptions.

Particularly when the participants are from diverse background which are unfamiliar to the research team

When interpreting the about the findings, it is important to ensure that the findings are not only valid and reliable but authentic and truly represents the experiences of the research participants. 

Inclusive practice and mixed methods research design!!!

Understanding the impact of an intervention, or developing the efficacy of a treatment, should include the person, who will be impacted by it! Many members of the rare disease community have become experts in their own experience!  Their insider knowledge, of their condition, will assist research practitioners, with the interpretation of the research outcomes. This is so vital!! When there is a lack of understanding about how interventions affect diverse communities who often do not participate in research!!! 

There has to be room, in the research space, for the diverse rare disease community to become partners, in a mixed methods research design! When the robustness of quantitative analysis, can sit alongside, the authenticity of the qualitative research approaches.

About the author

Dr Sondra Butterworth is the founder of RareQoL, a Community Health Psychologist, and mixed methods researcher. This blog is an excerpt taken from a podcast series ‘Teachings from a PhD’. Sondra has lived experience, in that she is from a rare disease family, and a carrier of a rare disease herself!

This blog will also be available as a podcast. It will be the second in a series of podcasts designed to raise awareness about Inclusive Research Practice, and to promote our, Equality Diversity and Inclusive Research Association, or EDIRA Conference, which will be held in Cardiff on 12th May 2023.