This is a new series focused on personal journey with eczema while managing a certain aspect of life. Today, we have Amanda, who is a return guest to my blog; a previous interview with her was on building a vibrant support group, something which Amanda had successfully done through her twitter efforts for Nottingham Support Group for Carers of Children with Eczema (NSGCCE). This interview is special in that it’s not about Amanda (who also has eczema), but about the many eczema patients she knows who have helped better the future for eczema sufferers through their participation in eczema studies.
Marcie Mom: Hi Amanda, thanks for participating in this blog series. I understand that NSGCCE and Professor Hywel Williams are supportive of research studies on eczema. As with all studies, the more participants, the stronger the conclusion for the study. How do patients normally become aware of a study that they can possibly participate in?
Amanda: That is such a good question, Mei. If a researcher wants you, or your child, to be the subject of a trial, they should approach you with sufficient information (which generally has been approved by an Ethics Board) so that you will know what they are testing, what the alternative treatments in the trial might be, how long the trial is, how you can leave the trial early if you need to, and what the potential problems of participating might be for you.
The other way of taking part in a trial is to take on a shaping role for the trial. You might be invited to give the patient perspective on the design of the trial, you may be a co-applicant for the trial or you may join the management team which ensures the research follows its plan and monitors for problems. Quite honestly this side of participation has less of an obvious route. It is, however, essential that patients help shape research – to ensure that it is going to be appropriate and meaningful for our future eczema treatment.
We all know that everyone with eczema finds that the eczema affects us in different ways different combination of triggers, different ways of life, different places the eczema affects, different skins which react in different ways. And, yes, colour matters. Research needs to reflect this diversity: get involved! So be proactive – speak to your dermatologist, join a patient group like that of the Centre of Evidenced Based Dermatology
Marcie Mom: For research studies to be effective, I’m sure variables have to be controlled and managed. What is the role of involvement of eczema patients in planning and developing the study?
Amanda: As a patient, you will be in an advisory position and will not be expected to do the work – but there will be a time commitment for periodic telephone conferences or meetings, over the length of the project. The kind of questions you will be considering will be: are the outcomes meaningful, is the commitment from subjects realistic, is the patient information appropriate? It is your chance to make this research really useful.
Marcie Mom: I suppose that certain actions need to be taken by the patient throughout the length of the study in order to collate the results. What are some difficulties that parents would have to deal with, in order to ensure that they are complying with the actions required?
Amanda: The difficulties for research subjects will vary depending on the trial of course. But obvious concerns would be the length of the trial, whether the child has been allocated to a placebo (non-active intervention), inconvenience of testing (the test may be done some way from the child’s home, or may be done during school time for instance), the child’s eczema may flare or become unmanageable, family life may make it awkward to participate, perhaps the child might not so-operate (for instance if they need to use a stinging topical treatment or a horrid tasting medicine) – the list could be endless. This is where a patient being involved in the design of the trial will make a huge difference by flagging up potential problems and trying to minimize them.
Marcie Mom: One final question – is there a study that has better-ed the life for eczema patients?
Amanda: Most research is building on research that has been done before, Gradually research moves us forward to a better place. There is no doubt that I would rather have eczema now than 50 years ago because there is so much more known about eczema. And, of course, there is often a huge time lag between publication of results and implementation of findings. Have a look at the GREAT database http://www.nottingham.ac.uk/greatdatabase/index3.php where there are some very interesting trials.
To my mind the eczema research priority setting partnership was one of the most interesting things done in recent years to attempt to prioritise what is really important to find out for eczema treatment in the future.
Marcie Mom: Thanks Amanda for taking time to share this important aspect of eczema study with us and I’m sure parents reading this will be more open to helping out in a future study!