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Community/Research Champion training

NIHR Research Ready Communities programme

<Your name, title and organisation>

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Part 1 - Introduction to health and social care research

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What will we cover?

What is health and social care research?

How can people take part in research and how do we keep them safe?

The Research Ready Communities programme and Community Champion role/Research Champion role

Practical skills - community conversations and community mapping

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Agenda and housekeeping

[add in the timings and dates for your training session(s), including any breaks and lunch]

[add any housekeeping points as is relevant]

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Welcome! Please fill in…

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A name badge

One thing you hope to learn

Your favourite thing about (add location)

Two post-it notes

If you need help writing anything down today, please just ask

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Agreed ways of working

In these training sessions, we will…

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What is health and social care research?

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Health and social care research

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What comes to mind?

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Health and social care research helps us to…

Find and improve treatments

Improve Diagnosis and treat earlier

Prevent illness and look after ourselves

Identify gaps and what’s missing

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The first health research study

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Follow the link to find out how health and social care research is changing lives

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Quiz: What does health and social care research look like?

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Where does research take place in England?

4. At home

5. Online

Hospitals

Care homes

GP practices

At home

Online

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People must have a medical condition or illness to take part in health and care research.

True

False

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A research study does not need approval from an independent Research Ethics Committee if it is about an important enough topic.

True

False

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True or false?

I have to be invited to take part in a research study by my doctor or the NHS.

True

False

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Examples of taking part in research

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Our research participants

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Charlie

Jane

Himesh

Emily

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What are some of the potential benefits to people taking part in research?

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For the person taking part

For their family and/or carers?

For people in the local area?

For the country

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How do we keep people taking part in research safe?

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The safety and well being of the individual prevail over the interest of science and society.

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Development of ethical standards in research

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Cholera vaccine trial

1906

Porton Down

1953

Belmont Report

1979

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Get your researcher hats on!

You are now a team of health researchers.

Your study wants to compare different creams for treating eczema in adults.

In your group, follow the research study journey on the next two slides.

Discuss the questions together to find out how we keep people safe when they take part in research.

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  1. Before you start your research

You have designed your research study and want to get started.

What do you have to do before you are allowed to set up your research study?

2. Recruiting people to your study

You have put posters advertising your study in hospital dermatology waiting rooms.

People email you asking if they can take part.

What do you have to do with each volunteer before they can become a research participant?

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Continue your study

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4. Change in circumstances

Halfway through the research, a participant tells you they want to leave the study.

They don’t give a specific reason.

What do you do?

3. Changing your study design

The data from your research tells you that one of the creams you are testing is less effective than the others.

You decide it is unethical to continue this line of treatment.

What do you need to do before you can close this part of the study?

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Break - 15 minutes

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About NIHR

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NIHR funds, enables and delivers world-leading health and social care research

More than 2,000 researchers hold our career development awards

More than a million participants take part in research supported by the NIHR each year

We’re funding more than 1,000 active health and social care research projects

We fund or part-fund over 10,000 front-line research delivery staff throughout the NHS

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Local Clinical�Research�Networks

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Covering 30 Specialties

Each LCRN delivers research across 30 specialties:

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Clinical Research Specialties

Ageing�Anaesthesia, perioperative medicine�and pain management�Cancer�Cardiovascular disease�Children�Critical care�Dementias and neurodegeneration�Dermatology�Diabetes�Ear, nose and throat�Gastroenterology�Genetics�Haematology�Health services and delivery research�Hepatology�

Infectious diseases�and microbiology�Mental health�Metabolic and endocrine disorders�Musculoskeletal disorders�Neurological disorders�Ophthalmology�Oral and dental health�Primary care�Public health�Renal disorders�Reproductive health and childbirth�Respiratory disorders

Stroke�Surgery

Trauma and emergency care

Cardiovascular disease

Diabetes

Mental health

Stroke

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Key Statistics 2021-22

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This brings the �total number �of participants �recruited over the �last 5 years to

5,008,179 

3,534

participants took part in health and social care research across �England

1,289,937

That’s the equivalent of

per day!

308 COVID-19 studies

772,359�participants took part in these COVID-19 studies across the UK.

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Key Statistics 2021-22

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6,383

studies were supported by the NIHR CRN.

of NHS Trusts recruited participants into NIHR CRN portfolio studies

100%

51% of GP practices

25,711 research participants completed the NIHR CRN’s Participant Research Experience Survey.

92% said they �felt valued �by researchers

93% would �consider taking �part in research again

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Add information about your LCRN/organisation here

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Be Part of Research

Join Dementia Research

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Be Part of Research

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www.bepartofresearch.co.uk

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Join Dementia Research

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www.joindementiaresearch.nihr.ac.uk

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Inclusion in research

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More representative research

Better treatments and diagnostic tools for more of the population

Better able to tackle health inequalities

Addressing health inequalities through inclusive research

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Research participation doesn’t always reflect…

Different groups or areas across the wider population

Those most affected by a health condition or issue

Differences in how groups respond to treatments or interventions

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Groups by health status (e.g people living with mental health conditions, physical & learning disabilities, visually/hearing impaired)

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Who is under-served in health and social care research?

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Who is under-served in health and social care research?

Women of childbearing age

LGBTQI+ communities

Ethnic minorities

Disabled people/

people living with disabilities

Homeless people

Asylum seekers, refugees, migrants

Geographic disparities

Income level

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What might some of the barriers to inclusion in research be?

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Potential barriers to taking part in research

Lack of available studies

Participation asks too much

Lack of trust

Lack of awareness

Negative financial impact

Language barriers

Perceived risk

Physical barriers

Travel/ transport barriers

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Safeguarding and data privacy

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Content warning

This section refers to different types of abuse and neglect.

Please take care.

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What is safeguarding and why does it matter?

What do you think safeguarding means?

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What is safeguarding?

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  • Protecting a person’s health, wellbeing and human rights.

  • Preventing harm and reducing the risk of abuse or neglect.

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What is safeguarding?

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  • In some circumstances, we may become concerned that somebody is either experiencing harm, abuse or neglect, or that they are at risk of this.

  • An adult at risk is any person who is aged 18 years or over and at risk of abuse or neglect because of their needs for care and or support.

  • Abuse or neglect in any form needs to be identified and responded to appropriately to make sure harm can be stopped, or managed, to reduce the likelihood of it recurring.

The Care Act 2014

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Types of abuse and neglect

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  • Physical abuse
  • Domestic abuse
  • Discriminatory abuse
  • Sexual abuse
  • Psychological abuse

  • Organisational abuse
  • Financial or material abuse
  • Neglect
  • Self neglect
  • Modern slavery

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Who has a duty to respond if they are worried about abuse or neglect of somebody at risk of harm?

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You?

[add in programme lead name here]?

Your organisation?

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Everybody has a duty to respond if we are worried about abuse or neglect of somebody at risk of harm

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You

[add in programme lead name here]

Your organisation

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Safeguarding examples - Martin

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You are running a workshop about health research at a dementia cafe.

Martin, who you have seen previously at the cafe, causes you some concern.

He does not seem like his usual self.

He is wearing clothes with old food stains on them and his hair is very greasy.

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Safeguarding examples - Martin

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Martin also appears to have lost some weight.

You ask Martin how he is doing and if his anybody is helping him at home.

Martin says his relative who is his carer is helping him, but has been very busy.

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Safeguarding examples - Kira

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You are organising one-to-one conversations with people who attend your local community cafe.

You want to ask their views about research.

Kira regularly attends the community cafe with her 3-year-old daughter Naia.

You arrange to meet her for a conversation in the cafe the following Monday.

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Safeguarding examples - Kira

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You are waiting to meet Kira the following Monday.

She texts you to say she can’t make it. You reschedule for the following Monday.

When you meet, Kira keeps looking at her phone and says she is waiting for a call.

She seems stressed.

You ask if everything is okay.

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Safeguarding examples - Kira

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Kira says she is having problems with Naia’s dad.

Kira says Naia’s dad is angry with her and making it difficult for her to access the government’s Healthy Start voucher scheme.

She uses these vouchers to help with the cost of Naia’s food and milk.

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What should I do if I have a safeguarding concern?

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Tell your LCRN programme lead [add name] immediately

Make a written record of your safeguarding concern as soon as possible

React calmly and neutrally

Explain that you are concerned and need to tell your supervisor so that you can help them get support

Please amend this slide to reflect your local safeguarding procedures

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How else can I help with safeguarding?

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Don’t meet privately with anybody. You should meet in public or group spaces.

Don’t share photos or videos of people online unless they have given you verbal consent.

Don’t promise somebody that you will keep a secret for them if they ask to share something private with you.

Explain that you are required to share anything that makes you worried about their or somebody else’s safety or wellbeing.

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Data privacy - what is personal data?

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Any data that means a person could be identified from that data, directly or indirectly.

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Data privacy - what is personal data?

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Name

Identification number

Location data

Online identifiers (e.g social media account)

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Data privacy - special category data?

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Some personal data can be more sensitive in nature, and requires a higher level of protection.

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Data privacy - special category data

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Race &

Ethnic origin

Political opinions

Religious or philosophical beliefs

Trade union membership

Genetic and biometric data

Health data

Sexual orientation

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How can I help protect people’s data privacy?

‘Record learnings not stories’. Only collect and/or record anonymised information (if you need to) that does not include personal data.

If you need to collect personal data for any reason (e.g email addresses at an event), you must let your lead contact know in advance and follow their instructions on how to record and store this information.

Only access information your staff contact has given you access to (where relevant). It is illegal to look up confidential information about patients in health settings.

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How can I help protect people’s data privacy?

Don’t share personal data in any shape or form. If you need to, you must speak to your staff contact first.

Don’t take copies of any personal data in any format (e.g photos, photocopies).

Do not remove any personal data from the organisation’s premises.

Do not leave personal data lying around unattended.

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Group activity: Sharing the news about research

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End of part 1 check in - how are we feeling?

Weather map

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Part 2 - Research Ready Communities

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Agenda and ways of working

[add details of agenda and timings for this part of Community Champion training]

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Ways of working

[add in previously agreed ways of working here if doing this module on a different day to module one - check the group is happy or if they want to add/change anything]

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Check-in

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Research Ready Communities

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  • Health and social care research better reflects the needs and interests of all our communities.

  • As a result, we are better able to address health inequalities.

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What are we trying to achieve?

Long term vision

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Build trusting, mutually beneficial relationships with the community

Listen to and understand the community better

Work in partnership with the community to make research more inclusive and representative

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How can Research Ready Communities help us get there?

Programme aims:

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Programme pathway

Build partnerships with local organisations

Find and train Community Champions

Support Community Champions to hold listening conversations

Co-design local activities to improve inclusion in research

Implement co-designed activities together

Future partnership

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Community Champions - what does the role involve?

Attending Community Champion training

Listening conversations and workshops

Community mapping

Co-designing local activities

Implementing local activities

Celebrating success and thinking about next steps

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What support can I expect as a Community Champion?

Free training with certificate and skills development

A toolkit of resources and materials

A dedicated staff contact to support you throughout the programme

Peer support and collaboration with your fellow Community Champions

[ADD IN ANY REMUNERATION AND EXPENSES INFORMATION]

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What Community Champions have told us

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What can Research Ready Communities achieve?

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Research Ready Communities Blackpool

"It means that young people in the town will have the resource required to undertake research and advocate on behalf of their peers.”

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Any questions?

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Visioning postcards

One thing I would like to achieve in our community is…

One thing I would like to gain as a Community Champion is…

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Community conversations and mapping

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Why conduct community conversations and mapping?

To help us co-design activities that will make research more inclusive and representative of our community, we need to understand a few things first…

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Awareness and views about health and social care research

What do people know about health and social care research?

How do people feel about taking part in health and social care research?

What are people’s views on the importance and relevance of health and social care research?

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What’s in our community?

Individuals/

people

Physical environment and landmarks

Arts, recreation and leisure

Places of community activity & involvement

Local institutions & public services

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How will we find out this information?

One-to-one community conversations

Group community conversations

Community mapping

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One-to-one community conversations

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What do we need to consider before and during our one-to-one conversations?

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Considerations

Create a comfortable and safe environment considering the other person’s needs

Let people know why you want to talk to them and what you will talk about

Manage expectations about what can result from your conversation

Let people know they have a choice to speak to you

Signpost people to further information about research

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Group community conversations

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Sticker wall

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Yes

No

Pineapple belongs on pizza

Cats are better pets than dogs

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Vote with your feet…

Vanilla is the best flavour of ice cream

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H-diagram

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There are enough shops where I live

Ideas/suggestions

Why?

Why not?

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Carousel

Things that make an ideal weekend….

Things to do in our town/city…

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Social media

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What comes to mind?

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Word cloud example

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What comes to mind when you hear the term ‘Respiratory Research’?

Original word cloud developed by Blackpool Community Champions (2022)

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Photovoice

What does health and social care research mean to you?

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What questions or concerns might people have about health and social care research?

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Community mapping

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What’s in our community?

Individuals/

people

Physical environment and landmarks

Arts, recreation and leisure

Places of community activity & involvement

Local institutions & public services

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Example community mapping

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Example community mapping

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1 - Royds Hall Community School & Luck Lane Primary School

2 - Paddock Junior Infant and Nursery School

3 - Huddersfield Grammar School

4 - Huddersfield Quakers, Destitute Asylum Seekers Huddersfield, Sanctuary Clothing Project

5 - Paddock Cricket Club

6 - Jubilee Community Centre

7 - Paddock Community Trust

8 - Paddock Bowling Green

9 - Patricia Stoj Dance School

10 - Huddersfield Gymnastics Club

11 - Paddock Post Office

12 - Paddock Head Pharmacy

13 - Base Day Centre (adult day care centre)

14 - B Singh Pharmacy

15 - St Thomas Vicarage

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Agreeing our next steps

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Feedback time! Please fill in a form

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Closing thoughts…

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My main takeaway from this training is…

I still have questions about…