The PA Research Top 10 – We’re nearly there!

So – it’s all going to come to an end on the 2nd December of this year. No, not life as we know it – I’m talking about the year-long James Lind Alliance process that seems to have taken an eternity to complete.
I want to tell you more about what you might not consider to be a very interesting project. It is, quite simply, the most important milestone that this society has achieved, and I’ll tell you why.

James Lind

Let’s start with old Lindy boy himself. He was an 18th Century doctor who worked for the navy and who had a really suspect hair-stylist and a taste in fancy waistcoats. Now, Dr. Lind, or Jimmy to his friends, is usually associated and credited with discovering the cure for scurvy. This in itself is a remarkable achievement, scurvy is a particularly nasty disease that affected sailors on long voyages. As many as 50% of seamen would die of it during long voyages. It’s caused by lack of Vitamin C in the diet that leads to teeth falling out, incredible tiredness, aching limbs and bleeding skin that won’t heal. Where James Lind comes into the story is that he tackled the disease head on, and in doing so conducted the first ever Clinical Trial – and that’s why he’s held in such high regard by scientists today; he is the father of clinical trials that lead to advances in medicine. His rudimentary clinical trial involved taking groups of sick sailors and administering various ‘medicines’; some were given whisky; others rum and one unfortunate group were given citrus fruits (lemons and limes). And would you believe it the group given the lemon and lime juice got better. Now we know that scurvy is caused by lack of Vitamin C, otherwise known as ascorbic acid, but at the time nobody knew about vitamins, let alone vitamin C – but it worked, and, presumably, when it was given to the group being fed whisky or rum they got better too. So, that’s why Dr. Lind is so revered by scientists – he introduced the world to Clinical Trials.

National Institute for Health Research

In the early years of this century the UK’s National Institute for Health Research was concerned that many of the research projects it was funding were not really benefitting patients. That’s not to say that the research being carried out at that time was useless, it just wasn’t benefitting patients. So, they got their heads together and began discussions as to how they could ensure that the £1 billion they were spending every year on research projects would benefit patients, or at least how some of the projects would go towards improving patient care. And they came up with the somewhat novel idea of getting clinicians, patients and carers together to identify research questions that they all agreed needed to be answered in a Priority Setting Partnership (PSP). And the organisation that would facilitate and administer these PSPs would be a non-profit initiative named after James Lind – The James Lind Alliance.

PA Priority Setting Partnership

We, that is to say the Pernicious Anaemia Society, formed a PSP in September 2020, during the pandemic, and it has taken over a year to get to where we are now. Throughout the last twelve months, we have asked you, our members, to identify questions, relating to the diagnosis and treatment of Pernicious Anaemia, that you feel need answering. We’ve held meetings to discuss the questions, we’ve looked at each question (there were over 3,500) and assessed whether they were within the scope of the PSP. This process resulted in a long-list of 40 questions and in another survey we asked you to choose the questions that you believe are most important. The results were used to draw up a short-list of 16 questions that can form the basis for research into aspects of Pernicious Anaemia.

Final Priority Setting

However, it’s not over yet. You see, we have two further workshops where 12 patients and 12 healthcare professionals will together discuss, debate and assess the questions that have been through the selection process and rank all the shortlisted questions in priority order, with a focus on the Top 10. And it is these workshops that will be taking place on the 1st and 2nd of December.

Why has it taken so long to identify ten questions for researchers to find the answers to? Simple, this is a recognised and accredited process that has meant that clinicians and patients have, together, identified problems with the way in which Pernicious Anaemia is diagnosed and treated. Imagine, we’ll have ten research projects that will benefit patients and that will be shared with funding bodies, research institutes and scientific societies to use them as a starting point for deciding future research projects and programmes to provide answers to the questions in order to bring about better diagnosis and treatment of Pernicious Anaemia.
In the weeks following 2nd December, we will be publishing the ten questions as will the James Lind Alliance. And then, hopefully, we will bring an end to the issues surrounding the diagnosis and treatment of Pernicious Anaemia. Roll on December 2nd!