RareQoL Research Exchange
Are you a community based group or small Charity with a research idea, but don't know where to start?
Are you a small rare disease Charity and want to use real world evidence to tell the stories of the families you support?
Please contact us, we would love to hear from you.
Our approach to research is influenced by the principles of community psychology.
This includes respect for equality and diversity, empowerment and participation.
We promote co-creation and a mix of both
quantitative and qualitative research methods.
our research projects aim to deepen
the understanding of the lived experience of
What do we mean when we talk about the community?
A community could be defined as a group of people living in the same place or having a particular characteristic in common.
These are communities may be defined by their ethnicity, culture, disability, age, location or rare disease.
Our RareQoL mission is to support our communities through resources and activities which will improve quality of life.
As a grass roots social enterprise, we recognise the importance of understanding the needs of the people we support.
Social Model of Health.
We are all involved in some form of social interaction: the term social is related to our society and how it is structured.
The biomedical model of health is traditionally viewed through the lens of health care professionals and is primarily focused on good physical health outcomes.
The World Health Organisation presents a holistic definition of health.
WHO state that Social Determinants of Health include social support networks, support from families, friends and communities.
What is research?
Research can be defined as a careful study of a subject or group to discover new information and to gain a deeper understanding of a research problem.
There is often an assumption that research is only undertaken by health or social care professionals in clinical or academic settings.
Community based groups do not often lead or drive research projects.
Community based social research
can include surveys, focus groups, questionnaires, and interviews, stories and observations.
RareQoL is a community based social enterprise. One of our principle goals is to work with community groups to promote and support community based research and evaluation.
Reflexivity is a process of continual internal dialogue and critical self-evaluation of how the researcher’s position may affect the research process and outcome.
Our Director of Research and Social Impact, Sondra Butterworth will be presenting a reflexive account for the findings from her PhD ' Quality of Life and Social Support in Rare Genetic Skin Conditions'.
RareQoL have teamed up with the Charity Fair Treatment for the Women of Wales.
We are planning to pool resources and work with other small Charities to promote the social health needs of the rare disease community in Wales.
We are planning a research project related to the needs of the EDS (Elhers Danlos Syndrome) community in Wales.
The Rare Disease Charity, Medics 4 Rare Diseases conducted a Red Flags Survey in 2018. The purpose of the survey was to find out what different Rare Diseases have in common during the time before diagnosis: a period often called ‘the diagnostic odyssey’.
It is common knowledge that often, receiving an accurate diagnosis is one of the biggest hurdles that a patient with a Rare Disease will face in their life.
Sondra Butterworth is involved in the analysis from the data set aimed to identify t “The Red Flags of Rare Disease”.
Models of Social Prescribing are becoming more prominent in community based practice.
Social prescribing is often defined as the non-medical interventions which address wider determinants of health to help communities improve health behaviours and better manage their conditions (BMJ 2019).
What is lacking in models of social prescribing is the theoretical underpinnings to support interventions and the research evidence to provide the rationale for different social prescribing approaches.
Sondra Butterworth was invited to facilitate a round table discussion at the charity Find a Cure's Rare disease Showcase. Her PhD research explored models of social support and concluded that Social Prescribing
models should link to Quality of Life and Social Support Theories.
DR SHANALI PERERA has joined RareQoL in partnership to develop research projects based on the lived experience of people with rare conditions. Shanali is the founder of Changing Lanes which is about er reflections and visual expressions from moments of meaning along her journey with a rare long term illness.
Shanili and Sondra are producing a series of podcasts which will be launched on 28th February 2021 to promote Rare Disease Day.
There are plans to write an paper for publication which combines findings from Sondra's PhD Research and Shanali's transformational journey from medical doctor to a rare disease patient.
We are seeking the opinions of community leaders, health and social care professionals and carers. We want to find out if there any issues our communities have related to safely coming out of lock-down.
We are receiving support from DEWIS CYMRYU to promote a database of organisations, event and activities suitable for our communities.
This project will also contribute to well-being and social prescribing community programs.
Quality of Life Research Poster
Sondra Butterworth Director of Research and Social Impact is a PhD student and the University of Chester UK