[mulberryParticipant]

Have you ever thought that collectively our myeloma data might be useful in finding a cure for this disease?

There is a project instigated and funded by Myeloma UK which for the last few years has been running a feasibility study across 3 major hospitals to set up a nationwide myeloma data base.
There have been a few myeloma patients involved, but we would like to open this up to other patients/carers who are interested.

The National Institute Of Health Research Health Informatics Collaborative Myeloma Theme Steering Committee invite you to an Engagement Event on November 8th 10:00-14:00, UCL Institute of Health Informatics, 222 Euston Road, Rm G01.

The NIHR HIC Myeloma Theme is focusing on collecting real world data from people living with myeloma in the UK. Data collected will include diagnostic practices and treatment regimens, in addition to other factors that may have an impact on overall outcomes and well-being (please see attached EHA abstract for more info). This theme has been established with the support of Myeloma UK, the national charity for patients in the UK living with myeloma, who understand the vital role real-world data has in improving outcomes in addition to ensuring the patient perspective is represented.

This Engagement Event will showcase plans and progress of the Myeloma Theme, from a clinical, patient and national data perspective. We also welcome industry, patients, clinicians, charities participation in an Interactive Data Workshop, to discuss issues such as (but not limited to):

What data questions are of interest across the industry, patients, clinicians, charities groups

How can industry and the NHS work together with RWE and improve patient access to treatments

How to ensure data is safeguarded, collected optimally, and representative of national and international

Who can we collaborate with to achieve the above?

Agenda

Welcome and Introductions

Value of RWD and NIHR HIC and added value projects

How to collect data smartly

11.00-11.30: Coffee Break

Our data: a patient perspective

Secure Data Environments

Interactive Data Workshop

1.00-2.00 pm: Networking Lunch

Please RSVP to Louise English l.english@ucl.ac.uk and list any dietary and/or access requirements.

If you have questions please contact me, Jane Finbow (Mulberry ).

The meeting will be 8 Nov 2023 from 10-2pm at University College London NW1 2DA

Patients and family members very welcome.

[rosietheriveterParticipant]

This sounds like an interesting project. Unfortunately I have not logged on for a while and so I have missed the meeting. Are any further meetings scheduled?

[mulberryParticipant]

The engagement event was very successful and there was a general level of enthusiasm from everyone present, not least the patients. I think the level of commitment from patients was a surprise to many of the professionals, who were inspired by what we patients said about our experience of the disease, and our future hopes. It seems several more hospitals are interested in becoming involved in the database, which will take the project on to the next stage. Several pharmaceutical companies attended and could see how the data could be useful to them. I hope this eventually leads to a funding stream, albeit without strings.
There were a number of data analysts present, who normally have no patient contact, who were enthused by the project suggesting new ways of using the data.

I’m sure there will be another event, although one hasn’t been arranged as yet. When one is I’ll post details on here so that anyone who is interested can get involved. If you PM me your email address I’m happy to give you the information directly.

Jane

Jane

[jb2514Participant]

I too missed the meeting and would be interested in participating in this research. Could you please supply me with details?
Thank you
JB2514

[mulberryParticipant]

Hi JB2514
The Committee is producing a report currently which I will share with you when it is finished.
It is heartening to have other patients interested in being involved in the project.
Jane.

[blobgobParticipant]

I would be willing to sign up as well.

I’ll try to catch any future forum updates on this.

[Author]

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