The James Lind Alliance Pernicious Anaemia Priority Setting Partnership, Steering Group and the survey – What’s it all about?
In recent weeks we’ve been asking you to complete our James Lind Alliance Pernicious Anaemia Priority Setting Partnership Survey. Now, that’s quite a mouthful, and some of you might, quite understandably, be a little perplexed by all of this. Perhaps you are unsure what is expected of you, why it is so important, or you just need some more information? Well, this is what it’s all about – why we need you to get involved.
How did it begin?
It all began when we became aware that many patients who have Pernicious Anaemia were told that, due to the Covid-19 Pandemic and the need to reduce footfall to health centres, our life-saving injections would be postponed. Many patients were told to go and buy B12 tablets and to start using them daily.
This was exacerbated when official advice stated that patients could store B12 in their liver for two to three years – advice that was wrong.
All of this sent shock-waves through the Pernicious Anaemia community with patients fearing that they would not only start to feel a return of their symptoms due to lack of treatment but also that they would develop serious and irreversible nerve damage. Our website and telephone helplines were inundated with requests for information and help. Many patients resorted to buying injectable B12 from internet pharmacies whilst others turned to alternative delivery methods including skin patches, sub-lingual sprays and tablets, nasal sprays, ointments and even raw or partially cooked liver.
It raised the question, just how effective were these alternative delivery methods in treating Pernicious Anaemia? And that was the question that was put to a group of doctors who are affiliated with this society. Enquiries were made regarding funding to allow a comprehensive evaluation of how effective the different delivery methods of replacement B12 were. After an initial discussion between the group, it was noted that any evaluation would need to include clinical psychologists as relying on the blood picture alone would not be sufficient to measure the effectiveness of an alternative delivery method and a Functional Outcome Score would need to be developed to measure just how the patient felt after any treatment; the Functional Outcome Score would measure the experience of the patient.
The doctor who made the original enquiry into sources of funding was told, by a senior figure in the UK’s health system, that this was exactly the sort of project that the James Lind Alliance would be interested in. And so, we explored just what the JLA was all about. Our first contact was via telephone where we explained what we were looking to achieve. After a lengthy discussion it was agreed that the project was one that the JLA would be interested in and a more formal meeting via Zoom was arranged.
Who was James Lind?
He was a Scottish Doctor who lived in the eighteenth century. He was the chief medical officer for the Royal Navy and is credited with the introduction of citrus fruits into the diet of sailors which gradually eliminated scurvy. He is regarded as the first doctor to practice preventative medicine. The introduction of Vitamin C to the diet of ships’ crews was not based on any real science – Vitamin C would not be ‘discovered’ until 1912 – but the observations of how it prevented and treated scurvy was one of the most important experiments in medicine.
So what is the James Lind Alliance?
We have to begin with the UK’s National Institute for Health Research (NIHR) which is the largest health research body in Europe with a budget of over £1 billion per year. In 2004 it was observed that much of the research budget was being spent on projects that investigated science that did not directly affect patients. And so the NIHR set up a special charity, named after James Lind, that would bring together doctors, academics and, more importantly patients, to identify issues relating to the diagnosis and treatment of patients with various diseases and conditions that needed to be researched. And that is what the JLA does.
How does the JLA Operate?
The process begins with a ‘Readiness’ questionnaire to explain just what the problems are with the diagnosis and treatment of, in this case, Pernicious Anaemia. Once the JLA are satisfied that there are issues that need to be addressed then the real work begins. A ‘Priority Setting Partnership’ is formed from clinicians and patients. The ‘priorities’ are the issues that need addressing with the diagnosis and treatment of Pernicious Anaemia. The JLA refer to these issues as ‘uncertainties’. And it is the work of the Priority Setting Partnership (PSP) to identify what uncertainties need to be researched. And how do they do this? A small sub-committee comprising of 12 people is formed and comprises a mixture of doctors and patients – all with an interest and knowledge of Pernicious Anaemia. This group, known as the ‘steering group’ devise and develop a questionnaire that will be used to identify the uncertainties that need to be researched. The questionnaire is sent out to anyone who might be able to identify the uncertainties including patients who have ‘lived experience’ of Pernicious Anaemia, as well as medical practitioners and clinicians, either as individuals or as members of professional bodies.
This is the point we are at now – we are asking for people from various backgrounds to complete our survey. Once the survey is completed (maybe by June or July) the data will be analysed by a professional data analyst who will, together with the steering group, identify a long list of questions that were most commonly asked or identified by those who completed the survey. This list is then checked against existing research. We will then come back to you to vote on the most important questions in an interim priority setting survey to reduce the long list of summary questions to a shortlist. The highest ranked questions are then discussed in a couple of workshops of patients and clinicians who together agree the final ten most important uncertainties that need to be researched.
The Top 10
Once these top ten uncertainties have been identified, researchers and research teams are made aware of the topics that patients and clinicians want to see investigated and they will then apply for grants, including those from the NIHR, to undertake the research. It is likely that the applications for funds that can prove that the topic has been identified as being important to patients and doctors will perhaps stand out from the competition.
So that’s what it’s all about and why it is so important. If you’ve already completed the survey, thank you and well done! If you haven’t already done so please consider doing so. It’s your opportunity to help identify what you would like to see being researched and that could be any topic to do with the diagnosis, the treatment or the day-to-day management of Pernicious Anaemia. It doesn’t take long to complete though there is no time limit involved. Get involved and tell us your questions in this short survey: