In 2010, the Board of Trustees were interviewed by INVOLVE about our research study because it was totally designed, used and controlled by hypothyroid patients.
INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few Government funded programmes of its kind in the world.
INVOLVE asked all kinds of questions such as why did we decide to do the study; what did we feel was the problem with the tests; who decided on the questions to ask; exactly how did we run the study etc. etc.
Thyroid UK was among five organisations who were interviewed for a report entitled, “Changing our worlds: Films about user-controlled research.” which was to be premiered at their Conference later in the year.
The filming took place at our office and on the day, Flexible Films turned up with filming equipment and lunch!
First of all, Lyn Mynott was filmed in a quiet room in her house about her story and
why she set up Thyroid UK. She was also filmed about why the study was done and
how it was designed and controlled by users (thyroid patients).
After Lyn was filmed, Jane Evans was filmed about how she co-ordinated the patients and controls for the study. We then had lunch before filming started in the office. We were filmed working and on the telephone along with some very funny situations!
We also had some people filmed whilst being weighed and having their pulse etc.
taken and filling in forms. There were a lot of extra shots taken i.e. the garden was filmed and we were filmed walking from the house to the office. Even Meg, Lyn’s dog was filmed following us around!
It was an excellent day with lots of laughter (especially when we fluffed our lines!) and sometimes tears (Lyn got a bit emotional whilst telling her story).
The film was premiered, along with the four other films, at the Involve Conference where Lyn did a presentation about our study and how we designed and controlled it.
Speakers and delegates at the conference included members of the public, service users, researchers, research commissioners, advisers and representatives of voluntary sector organisations.
The focus of their Conference was innovation and impact including the ways in which the public are involved in research - new approaches; understanding
the impact of public involvement; how it makes a difference and providing a platform for research on public involvement in research.
After the film was shown Lyn, along with the other groups who participated in the film, had to walk down a red carpet onto the stage and be photographed by “paparazzi”!
Delegates at the conference were able to contribute, learn, discuss and debate in a wide range of issues relating to public involvement in research. There were 50 papers presented, including two keynote speakers, 47 posters displayed, 20 different workshops or discussion sessions, an information session, a ‘soapbox’ session and 5 ‘next steps’ workshops.
Dr Russell Hamilton CBE, Director Research and Development, Department of Health, told the delegates that this was probably the most important conference that the National Institute for Health Research (NIHR) sponsors throughout the year. His speech focussed on why he, the Government and NIHR supports patient and public involvement in research, referring to the Department of Health’s 2010 White Paper ‘Equity and Excellence: Liberating the NHS’ which refers to research as a core part of the NHS.
It was good to see so many people wanting to push public involvement in research forward and it’s exciting that Thyroid UK was at the forefront of this!
We feel that public involvement in research will change the way research is designed and controlled thereby improving patient outcomes and that the film will raise awareness not only of patient and public involvement in research but also of the work that Thyroid UK does.
The film, “Changing our Worlds” is now available for download:
Changing Our Worlds (main film) - http://www.youtube.com/watch?v=sNWIOryWd5I
Thyroid UK - http://www.youtube.com/watch?v=HYaDjoMjC9w
Vision Sense - http://www.youtube.com/watch?v=bwZs_AespRA
Connect Works - http://www.youtube.com/watch?v=1w-eox5e2EY
Young Researcher Network - http://www.youtube.com/watch?v=31oE7gwxXsg
Films with British Sign Language:
Thyroid UK - http://www.youtube.com/watch?v=1I3w5925hmk
Changing our Worlds (main film) - http://www.youtube.com/watch?v=uXP5kioqR5g
Vision Sense - http://www.youtube.com/watch?v=h-DhIqkwIok
Connect Works - http://www.youtube.com/watch?v=gQ4cWXQLY5o
Young Researcher Network - http://www.youtube.com/watch?v=-b5UCtG3qW8