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Role of the advisory panel in the research process
The Advisory Panel included three representatives with experiences of living with different types
of disfigurement. Additional members included a collaborating GP and the Chief Executive of
The Healing Foundation. Two plastic surgeons showed initial interest in joining the Advisory
Panel, however, despite repeated invitations to engage with the project in the first 12 months,
were unable to contribute. Accordingly, a third Consultant Plastic Surgeon who was a member
of the Steering Committee for The Centre for Appearance Research (CAR) was kept abreast of
developments in the project, and offered comments as appropriate. The panel met for the first
time in Spring 2006. The project team presented their plans for Study 1, including the draft of
the questionnaire pack, and the letter, information and consent sheets to be given to potential
participants. Panel members offered constructive comments on the letters and questionnaires,
and where feasible, appropriate changes were incorporated into the final versions. It was also
suggested that the community sample be expanded to include more user groups, as the
experience of panel members was that the possibility of participating in research was perceived
as a welcome opportunity to increase understanding of the experiences of people with
disfiguring conditions. Following the meeting, a preference for individual rather than collective
meetings was expressed by members of the advisory panel. Accordingly, the Project Lead met
with panel members individually during February/March 2007 to summarise the results of the
preliminary analyses from the cross-sectional study (Study 1), and to discuss plans for the
follow-up studies and for the intervention strand of the project. At this point, two members
suggested the inclusion of a study on the effects of appearance concerns on intimate
relationships, and one was especially supportive of the idea that a study of people using
prosthetic devices would be useful. The lack of knowledge and understanding amongst GPs
about the impact of visible disfigurements was also highlighted. These ideas were all
incorporated into follow-on studies within the programme. Panel members were consulted on
an individual basis once more in June/July 2009, at which time the results, plans for outputs and
dissemination, and plans for further research were discussed and finalised.
In summary, the following actions were taken in response to advice from the Advisory Panel:
• Changes to recruitment letter to the community sample
• An enlarged base for the recruitment of the community sample to include more user
groups
• The initiation of a study on the role of appearance and intimacy
• An exploration of the knowledge of General Practitioners in relation to disfigurement
• Inclusion of a study of experiences of people with prosthetic devices
• Inclusion of prosthetists, psychiatrists and primary care workers in plans for
dissemination
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