As I am writing this Blog Post in June 2020 I feel sure that you will have heard the breakthrough news that a drug already in circulation could potentially lower the mortality rate of those severely affected by the Covid-19 virus. Not only is this drug, Dexamethasone, readily available it is cheap to produce. https://www.recoverytrial.net/news/low-cost-dexamethasone-reduces-death-by-up-to-one-third-in-hospitalised-patients-with-severe-respiratory-complications-of-covid-19
We are also hearing of emerging studies relating to vaccines – again being tested on volunteers, the results of which will be shared as they emerge. Whilst the method for these trials are tried and tested the vaccines are ones in development and therefore do carry a level of risk, hence the strict criteria and observation associated with participation. https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/uk-policy-framework-health-social-care-research/ provides further information relating to the governance of research in England.
There are many other ‘Covid’ studies currently active – as well as trials investigating drugs there are others investigating the impact on mental health and wellbeing, development of antibodies and identification of length of immunity etc.
The Chief Medical Officer was keen to mention and thank those patients who had volunteered to participate in all these clinical trials. If you, or a relative, are so ill with Covid-19 that you require observation in an Intensive Care Unit I imagine agreeing to participate in a study that will possibly save your life is an easy decision to make. Volunteering to support the investigation of a possible vaccine does take some thought and courage and yet is vital if preventing further spread of this virus is to be achieved.
Listening to and reading about current efforts to both treat those effected and to reduce further outbreaks made me think about clinical research in general and wonder – do we, as a population, understand how treatments (medicine, equipment, procedures) are developed and safely brought into the ‘patient care pathway’. As we undergo a surgical procedure, submit to treatment using ‘state of the art’ equipment or swallow a new medication do we understand that others – healthy individuals and patients with a similar illness have volunteered to test these on our behalf?
There are a number of ‘stages’ that developing new treatments work through – from the original thought to the safe prescription – and these do rely on the involvement of people. We often hear the term ‘guinea pig’ used in connection with research and the term does imply ‘untried, untested’ preparations and so I appreciate this can discourage people from agreeing to take part. Yet, my purpose is to encourage you to consider such requests.
Clinical research in Britain is extremely well governed – both in the laboratory and in the clinical setting. All new preparations undergo testing by ‘healthy volunteers’ in laboratory settings which highlight possible side effects. Once the safety/efficiency stages are complete it is ‘put to the test’ – and progress is then reliant on people with the specific medical conditions participating in trials to demonstrate and confirm the beneficial impact (dosage, application, length of treatment etc).
And it is here that progress is dependant on the population – the majority of hospital consultants and many GP practices regularly participate in trials. There are a variety of ways to become involved (and you can decline and/or opt out at any stage of the process without any impact on your future care).
The commonest method is to be informed of an appropriate research trial when attending a hospital/GP appointment. Large epidemiology projects, which study factors relating to health, are often ‘advertised’ in local papers and readers are encouraged to ‘self-refer’.
Or – you can use the NIHR-Clinical Research Network link to discover what active research is currently taking place in your geographical area, and if suitable, use the contact details to obtain further information. https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-take-part-in-a-study.htm
Many long-term studies such as Bio-Bank have no direct benefit to the participants as the study team are collecting data overtime to identify health trends and offer information for future health care planning. Although, there are benefits, being a participant and knowing that your weight, exercise level and lifestyle choices will be observed over time does, at least sub-consciously, encourage healthier decision-making. https://www.ukbiobank.ac.uk/about-biobank-uk/
The majority of my career in the NHS was working with the Clinical Research Network (the ‘Research Arm’ of the NHS https://www.nihr.ac.uk/explore-nihr/support/clinical-research-network.htm). I was always grateful when a patient agreed to participate in a research study. I understood that there were many reasons for their decision – access to innovative treatments, possibilities of a cure, ‘trying something new to see if it helps’ – but always underlying this choice was the willingness to contribute.
‘It may not help me but may help others’ – and for this, I say ‘Thank You’ on behalf of the future.
(Disclaimer – whilst encouraging participation in suitable research please understand I do not know your specific health circumstances so seek advice from appropriate health professionals)
NB – the terms ‘Studies’ ‘Trials’ ‘Projects’ are used throughout and are interchangeable (used in this way to demonstrate that this occurs naturally in clinical areas too)
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Acknowledgements:
| Photo by Courtney Hedger on Unsplash – Thanks – End Photo
Photo by CDC on Unsplash – vaccine Photo by Ronit Shaked on Unsplash – scales |
