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