# Lived Experience: Participatory Researcher Job Description

https://www.nihr.ac.uk/researchers/funding-opportunities/

## People to ask

Autism researchers and autistic advocates
Participatory researchers overall

## Ask

Full time role of participatory researcher to be funded by The Turing, £50,000, or two part time roles, for £25,000 each as a job share (check figures on this for Turing employment overheads)

## Deliverables

* Active participatory engagement thoughout the research cycle
* Co-working with researchers to help plan iterative research processes and community engagement
* Co-authorship of a paper/papers
* Embedding sustainability and growth by connecting with communities and forming relationships
* Exact nature of roll will depend on the type of lived exp

## Justification for funding

People with lived experience should be at the centre of research which will affect them, and yet they are often marginalised by conventional research processes, and often spoken about rather than to. "Nothing about us without us" has become []. The Alan Turing Institute [represents values of x, y, z], and has a responsibility not just to reflect but to lead genuinely inclusive research practices.

While it is becoming more normalised to recruit people with lived experience for focus groups and other means of consultation, the purpose of this fund is to allow for a more fundamental co-working process in which people with lived experience can work alongside Turing researchers for extended periods. This will empower them in a meaningful way: to set direction and make research decisions.

Lived experience as a form of expertise different but equal to research expertise: requires respect, acknowledgement and remuneration
Consultation insufficient for truly empowering research, but substantial input is a time commitment etc.
People excluded if there is no remuneration, e.g. full time carers, whose input is especilly valuble
Intersectionality important
Social inqualities mean a specific responsibility to rebalance and remove barriers - this is core to diversity and inclusion which is not just retrospectively reactive but proactive and strategic, and conscious of broader social and systemic interactions.

Paying Participants
- Pay students
- For book dash £125/person - approved
- Volunteers are students
- AutSPACEs - use Turing Way model of book dash - talk to Arielle;
- If you have people working in another UK organisation, make a contract for a secondment - made in several locations - utilising this for Turing Way - pathway for strengthening partnership

What hasn’t work
- What if people are unemployed? - can potentially do as contractor - person will be invoicing? - an additional burden on participants
- What if volunteers are not in the UK? - challenging
- Admin cost of Turing is really expensive; infrastructure costs are very expensive
- Honoraria is difficult because there are no policies around this

If we can partner with OLS, (or AutSPACEs?) - that could work
Indépendant researcher - apply with OLS

Amy Gallimore - important for marginalised communities

Frame as EDI work;
Conscious of inclusion of marginalised people;
Can we partner with organisations

Give them hospitality possibility -
Pre-agree part of budget will give vouchers - e.g. Love to Shop -

Bastian - some possible routes - Open Humans?

Outside Turing -
Bastian - transgenomics; Transbiome - fundraising; that is one possibility; cannot do it under AutSPACEs - but could be something Susanna could look for? - we want to pay researchers - can AutSPACEs name be involved?
Talk to Amy Gallimore - set up joint call?
People who are unemployed because of systemic - freelancing? - but we can support that?

One full position? 2-3 people being hired for flexible working - allow people to work flexibility -

Standard -
30% contract for 3 or 4 people;
Funding call coming up in September -

Involve Galliimore (even as co-applicant) - advisor;
£50-100k;
Ask for £52,000 minimum for one shared position?
Band 3 is £37,000 -
Extra percentage of time is me - some .2 percentage of my time and .1 x 2 percentage of advisory capacity for advisor; Gallimore and Bastian

REG time - user testing and co-design;

https://docs.google.com/document/d/1yshLDxSkYK6OHQHxNhOsCSvnbfNV5gCv/edit - this is the one used for Jen

Write bullet points

Really emphasis why lived experience is important - we need to hold accountability

1 position but to b shared by 2-3 people
- flexible working
- variety

Risk - assesss but don't really evaluate by risk;
Add Turing Way and RAM aspect - strengthens that proposal is linked
Make co-autohrship of a Turing Way chapter - not so much from people of lived experience;

Hire one researcher for proposal but also someone from TPS - getting things from AutSPACEs; dissemination aspect

Research one of the only ones that emphasises people with lived experience - how does that lead

Reach out to *Alisha Davis* - works a lot wth people on the ground to improve their access;

Amy Gallimore
Alisha Davis

one person who works with BBC - advisor for dissemination;
conferences - good ambassadors for AutSPACEs;
Gather evidence of impact participants have already made
- and what they are doing

Professional communicator - helps raise funding; lived experience - profile within the community;

Attach recommendation letters - people like Alisha, Bastian, Arron, Yo - why crucial in OLS; people who are strong allies;

One paragraph testimonial from volunteers
- set up a page - will you write sentences for page; - reusable (applying for funding - ask individuals)
- Why has AutSPACEs useful for them
- What barriers to contribution
- How would a nominal honoraria help in participation?

Look for outside opportunities;

SSI fellowship - £3,000 could be used for anything; apply to that -to participants?

https://mathison.turing.ac.uk/Interact/Pages/Content/Document.aspx?id=2186&SearchId=46270&utm_source=interact&utm_medium=quick_search&utm_term=gift

Example:
https://docs.google.com/document/d/1yshLDxSkYK6OHQHxNhOsCSvnbfNV5gCv/edit