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**Opportunity** to Shape the Future of Multiple Sclerosis Care: We Want to Hear from You!

We’re seeking people with lived MS experience to share views on remote care using smartphones and AI. for three years project, you may co-design project activities, review study materials, support recruitment, advise on study conduct, and help interpret findings. You’ll also help shape public summaries and contribute to the design and implementation of the dissemination strategy. Your input will guide development of accessible, inclusive digital tools for real-life MS monitoring.

Looking for patient voices to share thoughts on new way of delivering progesterone for miscarriage prevention

Calla Lily Clinical Care is a UK-based women’s health company developing a new way to deliver vaginal progesterone – a hormone treatment used to help prevent miscarriage.
We are looking for women who have experience using vaginal progesterone (like Cyclogest) or who might be prescribed it in the future trying to get pregnant to join our patient engagement group.

Survey and/or online small group into experiences of chronic (persistent) pain after surgery

We want to hear your views! Either by a quick, anonymous survey at:

https://forms.gle/ZKs868tGLHgxg2LQ6

And/or in a small group online discussion with other patients, using Zoom on Tuesday 10th June at 18;30-19;30. This will be recorded.

If you are interested, please contact j.m.findlay@exeter.ac.uk.

To make sure our group is representative, please let us know:

What operation you had
Whether you have tried lidocaine plasters
Your gender
Your ethnicity
The part of the country you live in

Blood Cancer UK Research Involvement Network

Have you had a diagnosis of blood cancer or been a carer for a loved one who has?

Our network is a group of committed people affected by blood cancer who review all grant applications considered for funding and work with researchers to shape and influence blood cancer research.

The network was established in 2021 to make sure people affected by blood cancer are at the very centre of all the research funding decisions we make at Blood Cancer UK. We’re recruiting new members.

Evaluating Virtual Wards for Acute Respiratory Infection

Virtual wards, often referred to as ‘hospital at home’, have emerged as a prominent, policy-driven innovation. Acute Respiratory Infections represent a substantial burden on NHS services. In this study, virtual wards will be evaluated as a management pathway for acute respiratory infection. This opportunity is to be involved in a Patient and Public Advisory Group to help direct the study, help design the methods and to analyse data.

Recovery following a pelvic fracture

Sometimes when an older person falls, they break their pelvis. A lot of the time the break can get better without surgery. We are interested in hearing about the care in hospital and in the early stages after leaving hospital. We are particularly interested in speaking with those who did not have surgery. Our aim is to better understand what works well and what could be improved to inform a developing programme of research. We will hold a one-hour workshop online for those interested.

Questionnaire – Impact of genetic conditions on obtaining insurance

This research is aimed at better understanding the experiences of individuals in obtaining life insurance when they have a genetic condition themselves, or when there is a genetic condition in their family. You do not need to have insurance or a genetic condition in the family to get involved.

If you would like to help us with this, please follow the link below to access the questionnaire. Further instructions will be provided within the questionnaire.

https://forms.office.com/e/BQ3y1cDuk7

Help shape palliative care and bereavement research

Researchers at Lancaster University are working with Sue Ryder to develop research projects aimed at improving palliative care and bereavement services. We would like to speak to people with advanced incurable illnesses, family members, informal carers, and those who have experienced bereavement to an online meeting (on Microsoft Teams) to help inform the direction of our research. The meeting would take place online (provisional time: 10.30-12.00 June 19th). It would involve some pre-reading.

Barriers, enablers, and potential health inequalities of talking therapies delivered remotely

Stroke survivors and carers from across England, including a range of ages, ethnicities, and
individuals with communication and visual impairment who have received remote psychological therapy and staff who have delivered this psychological therapy to stroke survivors to get involved, to ensure that the right research questions are being asked for the outcome sought.

Improving early detection of liver cancer

People who have cirrhosis of the liver are at higher risk of developing liver cancer. I would like to assemble a group with lived experience of chronic liver disease, or cirrhosis or liver cancer or liver cancer surveillance. This can be direct experience as a patient or indirect experience (e.g. caring for someone with these issues). By drawing on your knowledge, I would like to explore how data science research could help improve early liver cancer detection.