Organisations supporting patient involvement

Action Against Heartburn is an umbrella group consisting of ex-patients, charities and other organisations campaigning against oesophageal and gastric cancers.  We have a mailing list of about fifty interested individuals and organisations and we hold three Zoom meeting a year.  

If you are looking for patient involvement in your research, please contact us by emailing Action Against Hunger at heartburn17@outlook.com.

The Asian Women Cancer Group (AWCG) was established in 2005.  They support women diagnosed with cancer in North West London.  Most women in the group are breast cancer survivors but group members have also been diagnosed with bowel cancer, bone cancer, throat cancer, endometrial cancer, ovarian cancer as well as other types of cancer.  They currently have over 175 members in their group

The group meets weekly and welcome healthcare professionals and researchers at their meetings in North West London (must be discussed in advanced). 

If you would like to invite women from the Asian Women Cancer Group to be involved in your research, please email them at info@asianwomencancergroup.co.uk and include a lay summary of your research, what you are asking of the women interested in supporting your research including the time commitment and any financial compensation for their involvement.  They will share your request with their members and get back to you with those who expressed interest.  If nobody expresses interest in supporting your study, they will reply to you to let you know.  

Established in 2019, Black Women Rising UK is the flagship programme of registered UK based charity, The Leanne Pero Foundation that offers culturally sensitive support, information and advice, for women of colour who have had a cancer diagnosis.

We want the challenges faced by women of colour going through cancer to be visible so that they feel seen, heard and included in the UK wide cancer narrative, imperative for raising awareness within marginalised communities. We aim to empower our patrons through their cancer journeys via our bespoke projects, events and initiatives all whilst educating healthcare providers, support services and charities of their needs so they can provide suitable cancer support services that cater for them.
 
To get in touch with Black Women Rising please email foundation@leannepero.com 

brainstrust’s Patient Research Involvement Movement (PRIME) has helped to attract £20m of investment into brain tumour research. This vital movement actively supports the research community with their work to secure funding; the campaign for more investment in research; and it ensures clinical research projects are aligned with patient needs. If you are a researcher working on a project that needs patient and public involvement, please reach out to me at adam@brainstrust.org.uk, or Dr Helen Bulbeck at helen@brainstrust.org.uk.

Breast Cancer Voices brings the voice of people affected by breast cancer into the heart of UK-wide policy, research and care. They participate in research studies, take part in Patient and Public Involvement (PPI) opportunities. And they use their voices in many other ways to create change. Find out how Breast Cancer Voice can help you.
 
How to involve people affected by breast cancer in your work https://breastcancernow.org/our-research/information-for-researchers/involve-people-affected-by-breast-cancer-in-your-work/ 

British Liver Trust requests for patient involvement in research and other projects from clinical researchers and other projects.

Please download and complete the British Liver Trust PPI Response Pack and return to research@britishlivertrust.org.uk. 

Patient involvement can improve the quality and relevance of your research, helping you better understand how and where it will benefit cancer patients most and to articulate your results more clearly.

At Cancer Research UK, we actively involve people affected by cancer and use their experience of diagnosis, treatment and care to shape projects that will impact the future of other patients and their families. We do this through our Involvement Network, find more about our network.

We're happy to promote opportunities from other researchers, institutions and charities if we feel the work is relevant and we can clearly see where patient involvement will impact the research project. We will also share information about events relevant to our network members.

There is a 4–5-week turnaround from receiving your request to promoting your involvement activity so please ensure you can plan two months in advance for the feedback.

We have developed a toolkit that provides guidance, tips and templates to help you plan, deliver and evaluate your patient involvement. Discover our patient involvement toolkit for researchers and once you are ready, you can request an opportunity submission form by emailing involvement@cancer.org.uk.

CVS Brent is a local infrastructure organisation strengthening and building an effective voluntary sector in the London borough of Brent. They welcome you to publish/advertise your opportunities for public involvement on their blog or news page.  

To post your blog/requests for public involvement please email Josie Stein Josie.Stein@cvsbrent.org.uk 

The Eve Appeal is the leading gynaecological cancer charity.

There are five gynae cancers, which are womb, ovarian, cervical, vulval and vaginal cancer. Our aim is to prevent gynae cancers from developing in the first place, but if they do develop, we want to make sure they’re detected early so more people survive their diagnosis.

To make our goals a reality, we fund research in four key areas: uncovering the causes of gynae cancers, predicting a person’s risk of developing them, identifying how people can reduce their risk, and improving their detection and diagnosis.

We educate people about gynae health, from knowing their anatomy, what's normal and what's not, and when to seek help. We increase awareness of the signs and symptoms of gynae cancers and what people should do if they spot anything they’re worried about.

Through our Ask Eve nurse service, we answer people’s questions about their gynae health, gynae cancers and provide vital reassurance. This free, confidential and expert support is available over the phone, via email, and through our website.

For research queries, please contact Vas James: vasanthi.james@eveappeal.org.uk 

Independent Cancer Patients' Voice (ICPV) is a patient advocate group independent of established UK cancer charities and aware of the value of medical research to both public health and to the national economy.
 
Our aim is to improve existing treatments for every cancer patient and develop new treatments by bringing the patients’ voice into clinical research.
 
Contact form on the website or email or Chair of ICPV Dave Chuter 

The Men's VMU (Virtual Meet-up) is a monthly online Zoom meeting, held on the 4th Thursday of every month for men who have been diagnosed with breast cancer.

The VMU is an opportunity for these men to talk openly about their diagnosis and treatment and to share their concerns with other men who have had similar experiences.

The attendees are a diverse group in age, background, sexuality, race and professions. They work tirelessly with various charities, researchers, NHS, clinicians and the press to raise awareness of the disease in men. They will be delighted to be involved in any research.

Have a look at the website themensvmu.org to find out more or contact richard.galloway1@gmail.com

METUPUK is a volunteer led patient advocacy organisation working for the unmet needs of patients with metastatic breast cancer (MBC). Our four objectives are: raising MBC awareness and education; campaigning for equitable treatment, including access to drugs; increasing awareness and provision of information on clinical trials; campaigning for better data collection to ensure that every patient counts.

Our services aim to inform patients with primary breast cancer, their family and friends and clinicians of the red flag signs and symptoms of metastatic breast cancer. We do this through dissemination of the ABCDiagnosis Red Flag Infographics, information on our website and social media and displaying our Darker Pink Exhibition in public locations throughout the UK. For patients with metastatic breast cancer, we campaign for improved access to drugs, other cancer treatments and clinical trials. This may include addressing disparities and inequalities across the four nations of the UK, or between different commissioning groups within a given nation. We also campaign for access to new therapeutics and radiotherapy treatments, so NHS and private patients have the same access to treatment. We are stakeholders at NICE and the SMC providing written and oral evidence for technology appraisals and guidelines. We have created and maintain a clinical trials dashboard on our website showing a breakdown of current MBC trials in the UK by location and trial type. We call on Trusts to collect accurate and timely data on their patients with MBC. We are members of the Audit Advisory Committee for NAoMe, the national audit of metastatic breast cancer.

We have around 30 active volunteers and wide supporter base across the UK. Researchers who would like to connect with METUPUK patient advocates should email contact@metupuk.org.uk, providing details of their project and the PPI role. We will then discuss how best we can work together to publicise the project. There is more information on what we do at https://metupuk.org.uk

Opportunities for public involvement in NHS, public health and social care research in the United Kingdom.

https://www.peopleinresearch.org/

The primary aim of the Patient Engagement in Clinical Development service is to bring patients and life science companies together early in the clinical development process so that patients and the public can help companies to optimise the trial design by making it as participant-friendly as it can be.

We also aim to:

• Aid the life science industry in overcoming common challenges when involving patients and the public in research protocol design
• Foster positive relationships between the life sciences industry, NIHR, and the public
• Embed a culture of integration of the public voice from the outset of clinical development and throughout the study life cycle
• Establish a national, standardised mechanism for engaging the public and patients in the trial design stage of the clinical development process.

Visit their website to find out more information, or contact Emily Pickering: emily.pickering@nihr.ac.uk.

The Ovarian Cancer Action Research Network is a virtual group of people affected by ovarian cancer, who use their experience of the disease to help shape ovarian cancer research. Ovarian Cancer Action can connect you with members of our Research Network to help make your research more impactful for women affected by ovarian cancer, including:

• Sharing their perspective as someone who has experienced ovarian cancer.
• Joining committees or steering groups as patient representatives.
• Working with researchers to help develop research projects and refine research questions.
• Help to review patient materials to be used in research projects or clinical trials.

Please contact Research@ovarian.org.uk for more information.

Pancreatic Cancer UK’s Research Involvement Network is a group of people who each have a personal connection to pancreatic cancer. It is comprised mainly of family members and carers who care, or have cared for, someone with pancreatic cancer, as well as a small number of current patients and survivors.

Involving people with lived experience can help shape your project ensuring that it is appropriate for, meets the needs of and reflects the voice of people with pancreatic cancer.

We support any researcher looking to involve the voice of lived experience in their pancreatic cancer research. You do not have to be a current grant holder of Pancreatic Cancer UK or applying for one of our grant funding schemes.

To find out more please visit our website or email research@pancreaticcancer.org.uk.

Prostate Cancer UK can provide support to involve patient representatives in your research grant applications, both at the pre-application and post-award stages.  This is not limited to just Prostate Cancer UK funding calls.

Members in the Patient Representative Network have personal experience of prostate cancer and are uniquely placed to offer lay input into the design, funding, delivery and dissemination of your research.

If you have a new research proposal in mind, need a review of a protocol or the patient burden in sample collections, or maybe even someone to attend your research group meetings, our Network can provide valuable insight and perspective.  We firmly believe that involving people with lived experience of prostate cancer into your research significantly improves the value to men diagnosed with the disease.

Visit our website Involvement | Prostate Cancer UK to find out more and download the form to request PRN support.