Patient and Public Involvement & Engagement in Research

Be involved with our research

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Any patient, carer or member of the public can become involved with the research we undertake at The Royal Marsden NHS Foundation Trust and The Institute of Cancer Research, London. You can do as much or as little as you want, with all aspects and stages of our research. There are lots of ways in which you can choose to help us with our research.

We would like to work with you on our journey to new and better cancer treatment and care, because you:

Know what it is like to receive treatment and the impacts of side effects on your life.

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Can help researchers understand what matters most to patients and their families.

Can challenge and shape decisions about research. Help researchers ‘design’ research that is easier for patients to

understand.

There are several opportunities that you may choose to be involved with: You may simply remain updated regarding patient and public involvement

and engagement events such as open days or training. You may wish to contribute by email to reviewing research documents,

i.e. patient information sheets or leaflets.

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You might decide to become a member of the Patient and Carer Research Review Panel and through friendly meetings, comment on research proposals, and contribute to the formal review process for clinical trials.

Or you may even decide to become more involved with the ongoing production of research as a co-applicant or co-researcher.

You can choose to do one or more of these things and change your mind at any time. We will provide any necessary training and support that you feel you need. However much or little you decide is right for you, we are very grateful. You will have the satisfaction of knowing that you have helped us find smarter and kinder treatments for cancer.

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We will reimburse your travel and other out-of-pocket expenses. We will also offer other incentives.

If you wish to be involved, we will ask you to give us your details; these will be stored in a secure database managed by The Royal Marsden. We will also ask you to indicate how you might like to be involved.

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Patient & Public Involvement Application Form

Your contact details and some questions about youYour Full Name:

Address (please fill it in only if you want to be contacted by post):

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Telephone number:

Email address:

Best way to contact you (please tick one only):

Email ☐Telephone ☐Letter ☐

Are you: A cancer patient ☐A carer of a cancer patient ☐A member of public ☐

Please tell us the type(s) of cancers (e.g. breast, prostate, melanoma) and treatments

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you / the person you cared for have experienced, if relevant (please also indicate time of diagnosis).

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Please tell us why you would like to be involved with our research.

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Please tell us about any experience or skills you have which you feel might be relevant, e.g. involvement in any other research or health care organisations, networks or groups.

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Your agreement and preferencesPlease indicate your agreement and initial preferences about how you might like to be involved. You may change these preferences or stop your involvement at any time.

Place initials in box

I agree that my contact details and information can be stored on

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a secure database at The Royal Marsden and accessed by the Patient and Public Involvement team.

I would like to be sent correspondence regarding Patient and Public Involvement and Public Engagement Events and Training.

I would like to be sent research documents, i.e. patient information sheets or leaflets, and be given the opportunity to comment via email.

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I would like to join the Patient and Carer Research Review Panel. This requires more training and attending at least one meeting per year at The Royal Marsden (the Panel meets quarterly).

I would like to be send correspondence regarding co-production projects. I understand this will require training and more frequent attendance to meetings at The Royal Marsden.

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This data will be used only for the purpose of contacting you about your involvement and engagement activity at The Royal Marsden. Your data will be protected and stored on The Royal Marsden’s secure system. The only people to have access to your data will be the Patient and Public Involvement team; your data will not be shared with anyone else without your permission. Being involved or not in any research activities will have no effect on any care or future care you may receive. You can request to have your data erased at any time by contacting us on the email address above.

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Signed Date:

Thank you for completing this form.

Please return the form and send any questions relating to PPI to patientsinresearch@rmh.nhs.uk

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For more information on patient and public involvement and enagement at the BRC, please visit our website: cancerbrc.org

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Some more details about youWe would like to ask you some more details about you. We collect this information to ensure that we involve people from across the entire spectrum of our patients, carers and members of the public. We may also

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use this data to identify people who may have experience of or a special interest in certain areas of research from time to time, e.g. younger women with ovarian cancer for a study for ovarian cancer. You are not required to answer any of the following questions.

Gender: Male ☐ Female ☐ Other ☐

Age Group: 20 and under ☐ 40-49 ☐ 70-79 ☐21-29 ☐ 50-59 ☐ 80+ ☐30-39 ☐ 60-69 ☐

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Ethnic Group:Please select one box to best describe your ethnic group or background

WhiteEnglish / Welsh / Scottish / Northern Irish / British ☐Irish ☐Gypsy or Irish Traveller ☐Any other White background (please specify) ☐

Asian / Asian BritishIndian ☐Pakistani ☐

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Bangladeshi ☐Chinese ☐Any other Asian background (please specify) ☐

Black / African / Caribbean / Black BritishAfrican ☐Caribbean ☐Any other Black / African / Caribbean background (please specify) ☐

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Mixed/multiple ethnic groupWhite and Black Caribbean ☐White and Black African ☐White and Asian ☐Any other Mixed / Multiple ethnic background (please specify) ☐

Other Ethnic GroupArab ☐Any other ethnic group (please specify) ☐

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Disability: Do you consider yourself to be disabled?

Under the Equality Act 2010 a disability is described as a physical or mental impairment which has a substantial and long term adverse effect on a person’s ability to carry out normal day-to-day activities.

Yes ☐

No ☐

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