Patient access

Funding bodies expect public involvement in your research activities. By involving patients in your research, you can ensure that your research plans remain relevant to patient interest, that they are feasible and acceptable to potential research participants and that you communicate and disseminate your research in an accessible way to the general public. 

The 91ÌÒÉ« Involvement Group for Cancer can help in the following ways:

•    review a lay summary
•    review a Patient Information Sheet
•    provide input into grant applications
•    ensure you disseminate your research findings to the public is an accessible format

Find a list of organisations and contacts who can support you with patient access

Or if you would like to discuss your needs in further detail, please contact Kelly Gleason.

It all started with a question: What makes you feel alive?

91ÌÒɫ’s Cancer 91ÌÒÉ« UK Centre and the Patient Experience 91ÌÒÉ« Centre designed a feedback wall to engage and involve members of the public in cancer research. The Feedback Wall is a conversation starter - It allows researchers to engage individuals with their research in an enjoyable and anonymous way. It can also open conversations around decision-making in healthcare, inform research priorities and give people a voice in every part of the research cycle.
 
The feedback wall is one method to engage and involve the public. It can be used as a standalone tool or as an ice-breaker to invite people to other activities.
 

It all started with a question: What makes you feel alive?

Video clip promoting the importance of public and patient engagement and use of a feedback wall
*Supported by the Wellcome Trust, People Like You, NIHR 91ÌÒÉ« Biomedical 91ÌÒÉ« Centre, 91ÌÒÉ« College Experimental Cancer Medicine, CRUK 91ÌÒÉ« Centre.
 

Why do we work with patients and the public?

Public involvement in health research has been recognised by Higher Education Institutions, 91ÌÒÉ« Organisations and the Government (NHS) as having valuable impact on research outcomes, clinical trials and precision treatments.

There are many terms associated with the inclusion of the public in health research, and it is important to understand the difference between them. Predominantly, you will see the terms Involvement, Engagement and Participation. Cancer 91ÌÒÉ« UK defines these terms as follows:

Involvement, engagement and participation

Involvement


Involvement is when patients use their experience of cancer to help shape research. You can consult, collaborate or partner with patients. Involvement can add value at all stages of the research cycle.

Engagement


Engagement is where information and knowledge about research are shared with the public.

Participation


Participation is where patients or healthy volunteers take part in research as the subject of the study. This is where research is being done to them, not with them.

Kelly Gleason, the CRUK Centre Nurse, has been working closely with CRUK 91ÌÒÉ« Centre researchers to bridge the gap between patient and researcher in cancer research at 91ÌÒÉ« for over a decade.

President's AwardThrough Kelly’s work with the CRUK 91ÌÒÉ« Centre Public Involvement Group for Cancer, our researchers, nurses, patients and staff collectively advocate for a culture of involvement with patients and the public at 91ÌÒÉ«. We champion patient-led projects and activities through the CRUK 91ÌÒÉ« Centre Public Involvement Group for Cancer, 91ÌÒÉ« Science Cafes and public engagement (we are actively involved in Lab tours, 91ÌÒÉ« open days, Public talks and lectures and the annual 91ÌÒÉ« Festival).

If you would like further information on how to get involved with public involvement as a researcher, patient or member of the public, please contact Kelly (k.gleason@imperial.ac.uk).


Are you a researcher at 91ÌÒÉ«, a patient or member of the public? Are you thinking about getting involved in PPI? See what advice our patients and researchers have to offer in the following videos

Opportunities for Public Involvement

 The 91ÌÒÉ« Public Involvement Group for Cancer

Funding bodies are increasingly expecting public involvement in your research activities. By involving patient and public groups in your research, you can ensure that your research plans remain relevant to patient interest, that they are feasible and acceptable to patients involved in clinical trials and that you can communicate and disseminate your research to the general public. 

The 91ÌÒÉ« Involvement Group for Cancer meets regularly and responds to requests by emailin between meetings. The 91ÌÒÉ« public invovlemet group for cancer can help you to:

  • review a lay summary
  • review a Patient Information Sheet
  • prepare a grant application
  • disseminate results
  • find a patient representative for your study management committee

 If you would like to access the group, please contact Kelly Gleason.

91ÌÒÉ« Science Cafes

CRUK scientists and patients

The 91ÌÒÉ« Science Cafés are a unique opportunity for cancer researchers to present and discuss their research projects with individuals affected by cancer in a relaxed, open and informal setting. These events are not only important for educating and engaging with the public and patients, but it can also provide researchers with valuable patient perspectives on their work through sharing their personal experiences.

Usually the Science Cafés are hosted at the Maggie’s Centre at Charing Cross Hospital. However, due to the current COVID pandemic, the Science cafe's will be moving to an online format for the time being. Please connect to the live webinar through the 91ÌÒÉ« Events wesbsite.

If you are an 91ÌÒÉ« Scientist and would like to present your research at a future 91ÌÒÉ« Science cafe, please contact Kelly Gleason.

91ÌÒÉ« Science Cafes

Role of PET scan research in cancer treatment

Dr Preetha Aravind is a NCITA Clinical 91ÌÒÉ« Fellow at 91ÌÒÉ« College, London and a Clinician, Speciality trainee in Medical Oncology. She is doing her 2nd year PhD on novel PET imaging radiotracers in cancer treatment.

Preetha will share her research on the concept of PET scanning in the context of cancer treatment. She will discuss about imaging radiotracers that provide new insight into the tumour structure or function. The talk is to help understand the working of PET scans and its implications in the field of research and to get a better view on the thoughts from the public.

91ÌÒÉ« Science Cafe Nov 2, 2021

Role of PET scan research in cancer treatment

91ÌÒÉ« Science Cafe Nov 2, 2021

Dr Preetha Aravind is a NCITA Clinical 91ÌÒÉ« Fellow at 91ÌÒÉ« College, London and a Clinician, Speciality trainee in Medical Oncology. She is doing her 2nd year PhD on novel PET imaging radiotracers in cancer treatment.

Preetha will share her research on the concept of PET scanning in the context of cancer treatment. She will discuss about imaging radiotracers that provide new insight into the tumour structure or function. The talk is to help understand the working of PET scans and its implications in the field of research and to get a better view on the thoughts from the public.

91ÌÒÉ« Science Cafe May 27, 2021

Functional Outcomes in Breast Surgery

91ÌÒÉ« Science Cafe May 27, 2021

The speakers of this event will share their research on outcomes following surgery for breast cancer, including reconstructive breast surgery. Outcomes measure how ‘successful’ a procedure or surgery is, for example with respect to patient appearance, quality-of-life and function. We will discuss how outcomes after breast surgery are currently measured and their limitations, including the need to better understand the patient perspective. We will also discuss ways to improve how we evaluate breast surgery using innovative technologies (imaging, sensing and robotics) and health economic analyses.

91ÌÒÉ« Science Cafe March 10, 2021

Lighting the way to better breast cancer surgery?

91ÌÒÉ« Science Cafe March 10, 2021

Lighting the way to better breast cancer surgery? Maria Leiloglou and Marta Kedrzycki

Maria Leiloglou is a 3rd year PhD student at the Hamlyn Centre for Surgical Robotics in the Department of Cancer & Surgery at 91ÌÒÉ«. Martha Kedrzycki is a clinical research fellow in translational breast cancer surgery and is also in her 3rd year of her PhD at 91ÌÒÉ«. Maria and Marta are working on fluorescence guided surgery in breast cancer. In our research, we use a fluorescent drug which targets/marks breast cancer, and then can essentially ‘light up the tumour’ in the infrared (not visible) spectrum. This helps the surgeon see where it is, how big it is, and how invasive it is in real-time on a visual display. The reason this is so important is because right now surgeons are limited to preoperative imaging or what they can see and feel during the surgery to guide them, which unfortunately is inadequate in about 20% of breast conserving operations (where they just take the lump out) and results in women needing another surgery. Using special image pattern analysis, Maria has been able to find significant differences between the cancer and normal tissue, to help make this technique more accurate and therefore clinically viable.

91ÌÒÉ« Science Cafe November 26, 2020

Transforming Data, Transforming Care.

91ÌÒÉ« Science Cafe November 26, 2020

Data – a small word with much meaning. IT allows data to be transformed, and to be transforming: to bring care into your home, better patient-centred data and even music. This Science café, facilitated by Lillie Pakzad-Shahabi, Clinical 91ÌÒÉ« Practitioner, introduces us to the concept of data transformation in healthcare by speaking to a panel from 91ÌÒɫ’s Computational Oncology Lab. Dr Seema Dadhania, CRUK Clinical 91ÌÒÉ« Fellow in Convergence Science, will discuss data facilitating home care; Miss Kerlann Le Calvez, 91ÌÒÉ« Data Analyst, discusses GlioCova, an attempt to use linked national cancer data to understand what the treatment and outcomes for adult patients with glioma are; Dr Matt Williams, Consultant Clinical Oncologist, discussing data sonification, where data informs music. The panellists will help us unpick the idea of data, share their research and most importantly are waiting to hear and listen to your views and thoughts.
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91ÌÒÉ« Science Cafe November 11, 2020

People Like You: Written Portraits

91ÌÒÉ« Science Cafe November 11, 2020

We have launched Di Sherlock's Written Portraits: her poetry residency was part of our research project ‘People Like You’: Contemporary Figures of Personalisation, supported by the Wellcome Trust: