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Case study: Ana Hobbs: The Cleft Collective

The Cleft Collective research programme is an ongoing study. It aims to answer the three questions most commonly asked by parents whose child has been born with a cleft lip and/or palate: ‘what caused this?’, ‘what are the best treatments?’ and, ‘will it affect my child’s life long-term?’ 

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Ana Hobbs: The Cleft Collective

The Cleft Collective, a Bristol-based cleft lip and palate research programme, was recently awarded the PIER Prize in recognition of its excellent patient engagement and significant contributions to the National Institute of Health Research (NIHR).

Ana Hobbs, whose daughter was born with a soft cleft palate, is a member of the Patient Consultation Group and Advisory Board for the study. Her family originally joined the Cleft Collective whilst living in Buckingham, they have since moved to Staffordshire and continue to participate in the study. 

Prior to the creation of the Cleft Collective, CLAPA (the Cleft Lip and Palate Association) asked if there were any parents who would like to be involved with aiding health professionals and the James Lind Alliance in naming the top ten questions regarding cleft. 

I remained part of that process until the questions were identified, and then once my daughter reached five years old we were invited to join in the Cleft Collective research project. This was before the younger cohort was added. As I had been part of the parent group, our family was keen to become part of the research that followed. It was important to our family that we could be part of research which could improve the future for other families.

My daughter was born with a soft cleft palate which is a cleft type most do not know much about, so being part of research that can support all cleft types was of particular importance.
It also provided an opportunity to support healthcare professionals who work hard on behalf of our community's healthcare needs.

As a family, we find it fascinating that just by answering a few questions and providing samples, we are helping produce the research findings that are beginning to emerge from the study. The study itself does not require much of our time or effort and communication has been excellent, as well as updates provided on multiple platforms.

The Cleft Collective has continuously included parents and patients in the study’s progression, in areas such as questionnaire development and how the study is delivered. This has made our community feel an integral part of the project and ensured our opinions and/or concerns are valued and important. 

I personally advocate patient and public involvement (PPI) in medical research, as I have experienced first-hand how research supports the improvement of future and current health practices. 

By involving PPI, it ensures research projects are focussed around an identified health need as viewed by those who experience it first-hand. It helps provide a focus on what is most important - such as with the Cleft Collective and the three most commonly asked questions they identified. This, in turn, can increase a person's confidence that the healthcare they are receiving as a result of previous research is the most relevant to their needs. 

As a paediatric student nurse, I am very aware of its necessity in order to continue to improve healthcare practices, and being part of a large research project myself, I am able to speak to others about the benefits and importance PPI has in research.

As it is stated ‘no decision about me, without me’, and personally, I believe approaches in healthcare would not be as effective if practice derived from evidence-based theory was not supported by research involving PPI.