Patient and Public Involvement and Engagement (PPIE) Representative for the ACTOv clinical trial

[OvacomeSupport]

Dear All

We have received the following information to share with you from the ACTOv trial team:

We are looking for an enthusiastic and committed individual to become the Patient and Public

Involvement and Engagement (PPIE) Representative for the ACTOv clinical trial. This trial aims to

improve treatment options and outcomes for people with ovarian cancer, by finding out if a new

way of giving chemotherapy doses (called Adaptive Therapy) can work better than the standard

dose of chemotherapy. It’s crucial that people with relevant personal experience are involved. As

a PPIE representative, you will help ensure that the perspectives of patients and carers are

included at every stage of the trial.

Key Responsibilities:

• Review and Feedback: You will review trial documents and patient-facing materials, like

information sheets and consent forms, to ensure they are clear, accessible, and centred on

the needs of patients.

• Promotion and Awareness: Help raise awareness of the trial through support groups,

charities, social media, and local networks. You might also contribute to creating

promotional content such as blogs, videos, or webinars.

• Support with Recruitment: You may work with your local trial sites/hospitals to help with

recruitment efforts, raise awareness of the trial in your community, and support patient

engagement at local sites.

• Regular Meetings: Participate in meetings every 6 months, or as needed, to oversee trial

progress, discuss any issues, and contribute to decision-making.

• Sharing Results: Help share the trial’s findings with the wider public through media

platforms, cancer support groups, and partnerships with relevant organisations.

Time Commitment:

• Ongoing Involvement: Once the trial is set up and actively recruiting, you may help with

recruitment at local hospitals and trial sites, helping to engage patients and promote the trial.

You may also take part in activities like creating content to promote the trial, working with

charities, and supporting efforts to share information about the trial with the public.

• Flexibility: Participation is flexible and will be tailored to your availability. We estimate a time

commitment of about 2-3 days per year, but this can vary depending on your preferred level

of involvement and interests. We will ensure that this role is manageable for you and not too

demanding.

Requirements:

• Lived Experience: Personal experience with ovarian cancer, either as a current or former

patient, or as a carer for someone affected by ovarian cancer.

• Interest and Willingness: No prior experience in clinical research is needed. However, to

actively participate and give useful input, PPIE members should have an interest in health

research and patient advocacy and be willing to learn.

• Engagement and Commitment: A willingness to engage with trial documents, give

feedback, and work with researchers is important. PPIE members should be comfortable

reviewing materials and taking part in discussions that will shape the trial.

• Communication: Strong communication skills are important because PPIE members will be

involved in designing the trial and sharing information about it.

Diversity and Inclusion:

We are committed to welcoming a wide range of perspectives and experiences. We strongly

encourage applications from individuals from underrepresented groups in research, including

those from ethnic minority backgrounds and the LGBTQ+ community.

Support and Training:

• Training: We will provide access to the freely available NIHR online course for patient/public

reviewers of health and social care research to help you build your confidence and skills. We

will also offer an opportunity to learn about the ACTOv trial to support your understanding.

• Ongoing Support: The UCL CTC trial team will be available to support you throughout your

involvement and can be contacted at [e-mail]. Additional training and

development opportunities will be provided as needed.

• Compensation: We greatly value your time and contributions. To support your involvement,

we will cover costs such as travel expenses, parking, and refreshments for in-person

meetings. For more details, please see the NIHR Public Contributor Payment Policy at:

nihr.ac.uk/nihr-public-cont....

How to Become an ACTOv PPIE Representative:

If you are interested in becoming a PPIE representative for the ACTOv clinical trial, or would like

further information, please contact the ACTOv trial team at UCL CTC: [e-mail]

As a PPIE representaive, you will play a vital role in shaping research that could benefit future

patients while helping advance clinical research for the ovarian cancer community.

Best wishes

Anna (Ovacome Support)

[SopSinger]

I have just tried to email the address given above and received a bounce-back. Please will you check the email address or email me on [removed by moderator] and I'll give you a phone number that they can use to contact me. TIA

[OvacomeSupport Partner My Ovacome Team in reply to SopSinger]

Hello SopSinger

Thank you for your message. I'm sorry you have had difficulty contacting the team. I think the issue might be that they placed a full stop at the end of the email address which is unlikely to be correct. I've just tried [e-mail] and it hasn't bounced back. Does this email work for you?

Update - I heard back from them and they said their email had been down all this morning and please could you send again? I hope this works but do let us know if not.

Best wishes

Anna

Ovacome Support

[SopSinger in reply to OvacomeSupport]

That was what I tried but if as you say their email has been down all morning, I'll try again now. Many thanks for your help.