Page 1: Background Information

DAISy-PCOS Leadership Programme: Join us!

Background

DAISy-PCOS stands for: Dissecting Androgen excess and metabolic dysfunction – an Integrated SYstems approach to PolyCystic Ovary Syndrome.

DAISy-PCOS is a new research study funded through the Wellcome Trust and being undertaken at the University of Birmingham led by Professor Wiebke Arlt and her multidisciplinary research team, alongside support from charities CystersPCOS Vitality and Verity. The research project is investigating the metabolic health of 1000 women with PCOS to look for potential ‘biomarkers’ to predict which women are more at risk of developing other metabolic diseases, such as diabetes, high blood pressure and heart disease. The research hopes to positively impact the treatment and management of PCOS in future.

Alongside the research, the team are also working on a landmark public engagement project that will work closely with members of the PCOS community to reduce health inequality for women with PCOS by reducing public misunderstanding and societal stigma associated with the condition. We are working to achieve this through co-crafting a variety of creative engagement activities rooted in community settings – with a focus on South Asian Communities and University/College Communities. Working with us to develop, deliver and evaluate these activities will be a group of women with PCOS based in the Midlands (UK) recruited as volunteers to take part in a novel Leadership Programme. This programme will involve online/in-person training and workshops over the next year, aimed at building their skills and confidence to advocate alongside researchers on PCOS as experts in their own condition. We aim to recruit a maximum of 30 women to take part to allow for in-depth discussion which would not be as possible with a larger group.

We are delighted to announce the opportunity to be part of this DAISy-PCOS Leadership Programme beginning in late October / early November 2020. Further information on the programme and eligibility can be found below. Recruitment will take place over August – October. To apply, please complete this questionnaire which should take approximately 3 minutes. We may also follow-up with a request for a 1-page personal statement about why you want to be involved. If so, you will have a week to write this and email it back to us.

Programme Information & Volunteer Eligibility:

Between now and October 2020, we are hoping to recruit up to a maximum of 30 volunteers to take part in a novel training programme to build leadership in PCOS. Training will cover:

  • Media Training
  • Mental Health Training
  • Public Engagement Training
  • Leadership Skills Training
  • Developing Expertise on Causes and Consequences of PCOS and options for monitoring and treatment. These sessions will be run by researchers and clinicians who work directly on PCOS. Sessions will cover topics such as the links between PCOS and fertility, hirsutism, obesity, metabolic disease, pregnancy risks, as well as how to follow up with your GP and more. We will also have flexibility within the programme to include additional PCOS-related topics that our volunteers would like to see covered.

Our aim is to run each training/workshop session online via Zoom approximately every 3 weeks and we will use Doodle poll to select the most convenient dates – which may occasionally include evenings/weekends. Each session will last approximately 2-3 hours including discussion time. We will also aim to run some sessions in person at the University of Birmingham when it is safe to do so, but for now the programme will run online. Together as a group we will also plan and run public engagement activities in 2021 and 2022 for the wider public to raise awareness of PCOS and to break down stigma and misunderstanding about the condition. This will include community events, educational videos and a crowd-sourced art project to share women’s stories and experiences of living with PCOS.

To be eligible to apply, you must be aged 18 and over. We are also especially keen to work with:

  • Bilingual British South Asian or bilingual South Asian women with PCOS, living in the Midlands (UK) region. [Bilingual e.g. English alongside, for example, Urdu, Bengali, Punjabi or Hindi.]
  • University/College students (of any ethnicity, including British South Asian or South Asian) with PCOS, living in the Midlands (UK) region

If you do not fall into these two groups, it is still worth getting in touch as we are not limited to these groups – enthusiasm and commitment to the programme goals are also important.

Desired Characteristics:

As our project is looking to build leadership skills, we need to make sure that those who take part in the programme are comfortable with the level of commitment involved before taking part. In particular, you must be:

  • Able to commit to the undergo the equivalent of 7 days* training in 2020-2021, plus a commitment to help advocate and collaboratively design, deliver and evaluate an ambitious programme of public engagement activities days (with support of the Public Engagement Manager) equating to approx. 10-12* further days over 2021-2022. These public events may need to run online depending on the Covid-19 situation.
  • Passionate about sharing aspects of your PCOS story publicly, including for example appearing on TV/radio and having images/videos of yourself profiled on the web and Cysters/PCOS Vitality blog as part of the project/research campaign profiling.
  • Motivated to support other PCOS women and their support networks – helping them to be better informed and aware of their options
  • Driven to advocate for PCOS research and to address gaps in public understanding and knowledge on PCOS, with a desire to reduce societal stigma and health inequality
  • Willing to share best practice at events and for example through contributing towards blog posts and evaluation of the overall project.
  • Open and culturally sensitive to working with people from a wide variety of diverse backgrounds and ethnicities
  • Interested in adopting creative approaches and building a positive and constructive environment and ways of working
  • Flexibility to travel within the Midlands and participate at evenings/weekends occasionally – though we will try to be as flexible as possible to accommodate accessibility needs. We will use Doodle poll to select the best dates for training and events.

Estimated Time Commitment: We estimate the time commitment to equate to roughly 17-19* days over 2020-2022 including training.

PCOS Training / Workshops Programme: 7 days

Public Engagement Events & Activities: 7 days

Evaluation & Legacy: 2 days

Planning Meetings: 3 days 

*This does not mean you will have, for example, 7 days of back to back ‘Training’. Instead, it means several workshop/training sessions of 2-3hrs each, will collectively add up to about 7 days, where a day is 6-8 hours. Similarly, the 10-12 days of engagement activities will also include planning and discussion meetings or for example time allocated to you taking part in a panel discussion or talk, plus time spent at home in your own time writing 3-4 blog entries for the Cysters/PCOS Vitality blog.

Please note: The programme is voluntary and there is no payment for taking part. We do cover some local travel costs for in-person meetings where needed, please ask if you have questions.

If you have any questions before you apply please contact Caroline, who'd be happy to chat with you: c.d.t.gillett@bham.ac.uk 

Privacy Statement:

We can’t promise to take everyone on to the programme as we have a maximum number of places available and other priorities associated with our funding, but wherever possible we will try to offer further opportunities to become involved with other aspects of the project which will take place later in 2021/22.

The DAISY-PCOS team and charity partners will use the information in this form as part of the recruitment decision making process. This details in this form will be securely stored for up to 5 years. We will never sell or share this raw data with any third parties outside of the University of Birmingham (unless they are under contract with the University e.g. a consultant) or our charity partners, however, data may be shared for project reporting internally (University of Birmingham) and externally (e.g. Wellcome Trust). It is not always possible to redact pooled data once published in the public domain, however, wherever pooled data has not already been published we will delete your data on request. By filling out this survey you agree that we will process your data in line with the University of Birmingham's Privacy Policy. If you have any questions contact the survey creator Caroline Gillett c.d.t.gillett@bham.ac.uk or contact the University's Data Protection Officer. 

You can also stay in touch with us @daisypcos (Twitter and Instagram) and visit our website daisypcos.com. You can also visit charity partners for further support.