top ten priorities

The results are in! We have the Top 10 Research Priorities for Pernicious Anaemia!

Following the Pernicious Anaemia James Lind Alliance Priority Setting Partnership (PSP) workshops, we now have our Top 10 Research Priorities; questions that patients, clinicians and other healthcare professionals agreed are the most important to be answered by researchers. The JLA Pernicious Anaemia PSP may be nearly over, but we are not closing the door on this work yet!

PSP Final Prioritisation

As you are probably already aware, the PSP workshops took place on the 1st and 2nd December, where 24 participants, 12 patients and 12 healthcare professionals attended. The attendees were sent an information and guidance pack in advance, which contained the priorities in random order and they were asked to identify their 3 most and 3 least important priorities and bring this to the workshops to aid and initiate discussions.

The participants were divided into four pre-arranged groups ensuring a balance between patients and professionals. The questions and their ranking were discussed in depth in every group. The groups were asked to place the 16 questions in a collective order of importance. Each participant was encouraged to share their views and give consideration to other people’s opinions. After the first morning, the ranking of the 16 questions from the four groups were combined.
psp workshops
The next day, participants were divided into groups again, but this time with different people so they could hear other people’s perspectives. The combined result of the previous day was the starting point for discussion. At the end of the morning session, the group rankings were again collated and the participants came together as one group to agree the final Top 10.

The Result: A ranked list of the top 10 most important research priorities for Pernicious Anaemia according to patients and health care professionals.

Our thanks to everyone involded in the workshops: the JLA facilitators who did a great job getting and keeping discussions going, the PAS team, and, most importantly, the participants who gave their time and effort and contributed so much to the whole process.

PSP workshops

These are the final Top 10 Research Priorities for Pernicious Anaemia:

PA top ten

Research Seminar

This morning, the Pernicious Anaemia Society hosted a Seminar where researchers with an interest in PA came together to be presented with the Top Ten questions and they discussed how things can be taken forward.
We’re pleased to say that around twentyfive researchers attended and they were not just from the UK – there were attendees from the USA, Denmark, Germany, Spain and Sweden.
We’re hoping that, following the Seminar, there will be several collaborations formed to take up the challenge of providing scientific answers to the questions.
And it is not only the top ten questions that can form the basis of research; there are another thirthy questions that, even though they didn’t make it to the top ten, are still interesting questions to be examined.

Providing robust scientific answers to any or all of these questions will help improve the lives of people with Pernicious Anaemia and will allow health care professionals to do their job better. This whole process started with you, when you participated in the surveys and workshops. So, a big thank you for your help! We might be asking for your help in the future when the research teams start their work.

How you can help

  • Share your experiences of the issues discussed in the report with us
  • Put us in touch with anyone you think might be interested in supporting our work
  • Become a member/healthcare affiliated member of the Pernicious Anaemia Society
  • Subscribe to news updates from our website or follow us on social media for the latest research news and developments on this project

Now we have the top ten, we need to fund work in these areas. Support the Pernicious Anaemia Society to address these questions, so that we can maximise the scale and quality of the work we can do together.
The key to future success will be working together and forming partnerships. We encourage all Pernicious Anaemia patients, their faimilies/carers and professionals to advocate the Pernicious Anaemia Research Priorities and to get involved in research to address these important questions.

You can read the full report of the Priority Setting Partnership here.

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2 Comments

  1. Elizabeth Houghton

    I will be very interested to hear the replies to these questions, especially number 4 as so many GPs refused treatment injections following the Covid outbreak. My own Doctor told me “That enough b12 was stored in the liver to last 18 months”, she also said that the injections were a placebo anyway. After 40 years of injections I would like to know when I was told lies, when I was diagnosed or 2 years ago.

    Reply
    • Martin Birch

      I Noted the last post with interest. I was ALSO told by a specialist in Sydney (Haematologist) that I was likely also experiencing a placebo effect when I advised her that I could feel the onset of symptoms prior to my injection, followed by relief. She also suggested that I should consider seeing a psychologist (I have never suffered depression in my life). I subsequently found an integrative GP who was much more aware of PA (had existing patients), and I am now injecting myself every third day with the hope of stretching that out with experimentation. I have details of every injection I have taken and exact dates and timelines, and my blood results going back ten years. I can map out the blood markers that show the gradual onset of the condition (and with two pathology recommendations to investigate the relevant antibodies – which were not noticed by doctors) and gradual onset of Achlorhydria, malabsorption of vitamins and minerals, and osteoporosis.

      My GP would not approve a iron infusion. He just did not understand the disease setting, and the concept of a ‘spurious’ Ferritin plasma reading within a inflammatory disease setting. To this end thankfully the same haematologist diagnosed functional iron deficiency, based on borderline low Ferritin, the disease setting, and relevantly my obvious symptoms. My PA journey and experience in Sydney, Australia has been a tale of woeful inadequacy in the medical profession. I had to ‘tease’ out a diagnosis (after 200 hours of research) and furnishing the specialists with positive Ab for both parietal cells and Intrinsic factor. I would love to set up and drive a Sydney Chapter of PAS. At least in Australia we can buy B12 over the counter and self inject – failing which I’m not sure what the outcome would have been for me because I experience severe psychiatric symptoms for nearly three years. I think my GI tract has permanent damage (no longer functions in a normal manner). The PAS research project will become very well chronicled at some point in the future and will spawn a new era for the condition. Goodness me if ever there was a cause worth its while it is this research initiative. Martin Birch

      Reply

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