After many months of work, the Pernicious Anaemia JLA PSP has reached the most important point in the partnership to date – the workshops.
The aim of the workshops is for the attendees to agree the TOP TEN most important questions for research into Pernicious Anaemia.
Pernicious Anaemia has been a medical blind spot for many years and because of this, hundreds of thousands of people are not getting the diagnosis and treatment for PA that they should, which is why this partnership has come about.
From our original survey about Pernicious Anaemia, which asked people what their concerns were and what they thought should be researched into PA, we had over 3,000 questions, and with the fantastic JLA Steering Group and a second survey, these have now been whittled down to 16 questions. Make no mistake, this has been an enormous amount of work with every piece of data looked at and scrutinised. And please, be assured, that every single question received will be kept and used to enable the PA Society to produce a list of Frequently Asked Questions – FAQ’s, which, in due course, will appear on our website.
To give you some background of the Priority Setting Partnership, the National Institute for Health Research funds, enables and delivers world-leading health and social care research that improves people’s health and wellbeing. In order to ensure that people who need medical research in relation to their illness, the NIHR formed The James Lind Alliance. The JLA, which is a non-profit making initiative established in 2004, brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 unanswered questions or evidence uncertainties that they agree are the most important. The main aim of the JLA is to make sure that health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives, which is why we asked you to take part in our surveys.
So, how and who will decide the final top ten?
Well, in addition to 12 health care professionals, e.g. GP’s, nurses who have clinical experience of dealing with PA etc., we have 12 patient/carer attendees – a total of 24 attendees. At this point, we’d like to thank everyone who kindly offered their time for the workshops. We had hundreds of applicants and are confident we have covered age, ethnicity and gender. We have attendees ranging from their 20’s to their 80’s.
At the time of writing, the attendees will now have received their guidance documentation not only by email, but also in hard copy tucked inside a lovely goody box. We hope they enjoy the contents of biscuits, tea, coffee, a mug amongst many other things!
By the time the workshops start on 1st December, they will be well versed with the workshop procedures.
What will happen at the workshops?
1st December 2021 is day 1. At 09.45, all attendees will switch on their Zoom where they will be welcomed and supported by the Chair of this PSP, Katherine Cowan and three other facilitators. Katherine will explain everything that is going to happen – the attendees will be split into small groups to discuss what they consider their top ten research questions are going to be. Obviously, there are likely to be differences in opinions of what those priorities should be, but that is why these workshops are so important as every view is listened to.
By the end of the first workshop, around 13.30, everyone will have made a note on their paperwork of what they consider their top ten priorities are. As said, having the opportunity to sit around a virtual table and hear a professional and layman’s point of view is invaluable to both sides.
2nd December 2021 is day 2 and the final day. The team behind the scenes will have already evaluated the data from day 1. This time, people will sit around their virtual table with different people from the day before. This is to ensure a rounded perspective and the opportunity to hear all points view takes place.
On completion of the discussions, and again, after having given personal opinions of the priorities for research, the workshop will come to a close and the Chair of the Pernicious Anaemia Society will say a few words.
By mid-afternoon, the overall results will have been evaluated and we will know what the opinions of the healthcare professionals and the patients are. We will know what the consensus is regarding the top ten priorities for research into Pernicious Anaemia.
As soon as we are able, this information will be shared with you all, via our website, newsletter and social media.
So, this is where we are. It is a very exciting time for the Pernicious Society and all the people who support us. Thank you and watch this space!