Category: PPIE Opportunities

Hello everyone,

My name is Irene Higginson, and I am a Dr and Professor of Palliative Care working on a new NIHR evidence review proposal focused on early palliative care in respiratory disease. I am looking for public collaborators to provide comments on the proposal at this stage, with opportunities for further involvement in online workshops in the future.

This work aims to better understand how early palliative care can support people living with advanced lung conditions, reflecting priorities highlighted through the James Lind Alliance.

I am particularly keen to hear from 3-4 people with experience of respiratory or lung conditions, such as chronic obstructive pulmonary disease (COPD), emphysema, or interstitial lung disease, either through personal experience or caring for someone. I am keen to bring together a diverse group of contributors with a range of experiences , and this will be reflected in the selection of the group. I will let you know of the outcome of your expression of interest by 10 May 2026.

What’s involved? .. Providing feedback on the proposal (approximately one hour or less). The initial work will be online. There may also be opportunities to join online workshops at a later stage to help shape the work further.

Reimbursement .. As a thank you for your time, you can claim £27.50 for the initial reviewing, which equates to around one hour of activity, providing feedback on the proposal.

If you are interested, would like to know more, or need additional support to take part, please get in touch with my colleague Eleanor Rochester at: eleanor.rochester@kcl.ac.uk

Many thanks for reading this, and I look forward to hearing from you.

Yours Irene Higginson

We are looking for volunteers to support research into a questionnaire that helps people with liver disease tell their doctors about their symptoms and concerns. Your input will help people with liver disease express their views and improve healthcare for many people who often face significant health inequalities. We would like to hear from people who live with chronic liver disease, or who have experience of caring for someone with advanced liver disease. You will attend a 30 minute online Teams meeting to discuss a new medical questionnaire. In the meeting you will be asked to give your opinion on whether the questions that are being developed are clear and understandable. All communication will be through email. We offer a £10 gift voucher to say thank you for your contribution. If you are interested in supporting this project please email hyeg19@hyms.ac.uk before 23/2/26. Thank you. Dr Beth Gulliksen (PhD student at Hull York Medical School)

We are delighted to invite you to register your interest to the next series of ‘Developing Leaders in Palliative Care’ workshops. 

This series of workshops will offer PhD students at the Cicely Saunders Institute a chance to collaborate with patients and members of the public (PPI). PPI members will have the opportunity to share their experiences and expertise with the students, to help them with their PhD studies and ensure their research will have a real-world impact. No previous research experience is necessary.  

The first workshop will be held on Wednesday 21st January 2026, 11.30-13.00. This workshop will be held online, via Zoom. Attendees of the first workshop will be invited to two subsequent workshops, dates to be confirmed. The second workshop will be held online, and the third will have the option to be held in person, in London. All attendees will be reimbursed for their time and, if attending in person, we will pay reasonable travel expenses to the final workshop.  

In this first workshop, we will hold three parallel sessions, as detailed below: 

Room 1 

• Amelia Cook: The validity and acceptability of the Integrated Palliative Outcome Scale in diverse populations with advanced illness 
• Charlotte Davies: Does a standardised comprehensive palliative care assessment (CPCA) improve person-centred assessment; how may it work and what is required to support its implementation into routine hospice care? 

Room 2 

• Natalie Ramjeeawon: Family caregiver’s hospital experiences of older adults in the last three months of life  

• Megan Bowers: Experiences of changes in physical function: analysis of interviews with people with cancer and weight loss 

Room 3 

• India Tunnard-Johnson: Geographical variation in place of death for people with dementia vs cancer 

• Ana Maksimovic: Economics and decision-making in dementia 

• Evan Brock: The use of Artificial Intelligence in Palliative Care and Dementia Care 

To ensure representativeness, we will be asking you to provide some information about yourself. All the information you provide will be kept confidential. After the events, all data will be destroyed.  

We will need to keep the meeting small to give you time to express your views and discuss fully. If we receive more applications than spaces available, we may only be able to invite some applicants to attend. However, we will be in touch to let you know of future opportunities.  

If you are interested in attending, please fill in the form using the link below to register your interest by Monday 5th January 2026. 

Developing PhD students through Patient and Public Involvement workshops – Fill out form 

A final list of attendees will be determined and notified by Friday 9th January 2026.  Please do not hesitate to contact us if you have any questions.

Best wishes,
India, Rachel, Megan, Natalie, Ana, and Amelia

Hello. My name is Ellie and I am a research dietitian from Imperial. I am applying for funding for a PhD research project looking at diet advice given to women with recurrent ovarian cancer.

–  What diet information is available online, and what do dietitians and clinicians advise?

–  What is the expert-consensus on best-practice for diet and ovarian cancer?

– Is proactive, earlier dietary advice beneficial? A feasibility study 

I am interested in hearing from people with lived experience of ovarian cancer (including relatives and care givers as well as women themselves) who can help with the design of this research. Involvement could be a small one-off meeting (e.g. to review a leaflet or provide insight and advice) or a larger contribution (e.g. regular meetings and involvement with analysis) depending on your interest and experience.

If you or someone close to you has or has had recurrent ovarian cancer, and you would like to know more, please send me an email at ellie.ware@nhs.net to express your interest. Please include your name, email address or phone number, and a brief summary of your experience.

Please share with anyone you might know

Thank you