Healthcare Research Needs You!
Learn more about how your contribution to healthcare research can:
- Reduce health inequalities.
- Improve patient treatment.
- And make the future of healthcare better for the next generation!
LET’S GO
Funded by:
Project Team:
How to use these modules
Complete each of the three modules and look for instructions on each page which will lead you to further information. At the end of each module you will be asked to complete a short quiz! You will be asked to click or hover with your computer cursor over different icons and words throughout the modules.
These modules work best on a computer
Instructions will look like this Hover over the sign to the right to see an example
Why Does Healthcare Research Need You?
Click each avatar to see what health inequalities look like in everyday life
We need diverse groups of people to participate in healthcare research so that treatments, care, and services work for everyone. No matter where they live or what background they are from. Our health system experiences health inequalities. They are unfair, avoidable and systemic differences in health across the population and between different groups within society. These include how long people are likely to live, the health conditions they may experience and the care that is available to them.
Tina
Ali
Marcel
Right now, research participation doesn’t always reflect:
- Different groups or areas across the wider population.
- Those affected by a health condition or issue.
- Differences in how groups respond to treatments or interventions.
age, sex and other constitutional factors
Through this training, you’ll learn more about:
Participation: What participation in research is, what happens and the benefits.
Research: What research is and how it works in the NHS.
Involvement: What public involvement in research is and how it works.
All so you can improve not only your health, but that of your family, community and the whole country.
Module 1: Healthcare Research
What is healthcare research, and how does it work in the NHS?
Let's Go
Healthcare research is essential to improving the nation's health and well-being. It involves studies designed to test new treatments, understand diseases, and improve patient care.
Prevent
Diagnose
Treat
The different types of research
Hover on the bolded text for the definition
1. Studies that test the effects of treatments or interventions like medicines, devices, or procedures are called 2. Studies where researchers follow patients over time without changing anything about their environment or care, for example, observational studies 3. Studies where patient or carer experiences are explored through questionnaires, surveys, interviews, or focus groups, including 4. Studies where new or existing anonymised data sets are looked at 5. Studies where biological samples, like cells, are analysed
interventional studies.
ethnographic studies
Here’s how the research process works
Each stage is important to ensure that research is conducted responsibly and leads to improvements in health care.
hover over the text for the definition
Identifying a Question
Gathering Participant Feedback
Designing the study
Evaluating Impact
Finding Funding
Applying Findings
Getting Regulatory Approval
Conducting the Study
Analysing Data
Sharing Results
Who is involved in NHS research
hover over the image to see the answer
NHS research involves various key players:
Researchers
Participants
Healthcare Professionals
Patients and the public:
Universities
Pharmaceutical and medical device companies
Research Funders
Regulatory bodies such as independent Research Ethics Committees
Regulators are also involved in research to keep it safe
click the organisation to learn more
The NIHR is the main organisation responsible for funding and supporting healthcare research in the NHS. It is funded by the Department of Health and Social Care and plays a key role in ensuring research improves patient care.
Research Ethics Committee
What the NIHR does - the 4Is The NIHR drives life-changing research for the health and wealth of our society across 4 areas.
hover over the icons to learn more
But there are many other organisations, agencies, and regulations that help with overseeing and monitoring research
click the hand icon to learn more
What happens after research has taken place?
Click the boxes to reveal more
After research has taken place, several organisations play key roles in deciding whether a new medicine or medical device can be used in the NHS.
The National Institute for Health and Care Excellence (NICE) considers how a new medicine or medical device should be used in the NHS.
The MHRA - the people who check that research is right - has responsibility for the following
NICE has the following responsibilities
Well done! You’ve reached the end of Module 1!
You’ve learned all about: • The different types of research and steps in the research process. • Who is involved in research, including some of the key regulators ensuring all is kept safe. • What happens when a research study ends. Here are some quick questions to absorb what you have learned.
Module 2: Participation
What participation in research is, what happens and the benefits.
Let's Go
What is participation in research?
click on the bolded text for more info
Participation in research is where patients and take part in a research study. They are key players in NHS research who provide data, test new treatments, or complete surveys. These are just a couple of examples - there are many different types of research studies that people can take part in! You might remember some of the different types of research studies from the ‘Research in an NHS Context’ module.
volunteers
Where do research studies take place?
The NHS is keen for research to take place not only in hospitals and GP surgeries, but out in the local community too. Take a look at some examples below - they might surprise you!
Hospitals
GP Surgeries
Schools
Prisons
Faith Buildings
Community Settings
What are the benefits to people taking part in research?
click the text to see the answer
For people taking part
For the local community
For families and carers
For the country
What do people say about their experience?
hover over the people to see the answer
It's important to remember that some people will have less positive experiences, but researchers and their teams are always learning and finding ways to improve! Participants are welcome to speak to their research team about any concerns and to share honest feedback.
Explore the videos to learn more!
What’s the process for taking part in research?
hover over each stage to see the answer
Here’s an example of the steps you would go through if you were taking part in a clinical trial! Similar processes would be followed for other types of research studies too, but some of the terms used may differ slightly.
Identification
Screening
Consent
Trial Period
Follow-Up
How do people find studies to take part in?
How people are asked to take part in research depends on the type of study. Some people may actively look for studies to join by speaking with their healthcare team, or family, friends and trusted community group leaders. They may also respond to adverts posted on online noticeboards on: You’ll read more about the ‘Be Part of Research’ service in ‘Module 2’ Keep an eye out for it! Others might be contacted by their healthcare providers and asked if they want to join a study. Healthcare providers can speak to patients directly, send them a letter about the study, or, with their permission, let the research team contact suitable patients.
National Institute for Health and Care Research (NIHR) websites such as Be Part of Research.
University websites
Why your participation matters
Remember, we spoke about health inequalities right at the beginning? Your participation in research helps the NHS address unfair, unavoidable and systemic differences in health across the country. With more representative people taking part, we can build better treatments and diagnostic tools for more of the population.
Better treatments and diagnostic tools for more of the population
Better able to tackle health inequalities
More representative research
How your participation helps
Medical science needs the participation of people from all kinds of backgrounds to ensure new treatments work for everyone. Clinical research can’t afford to ignore the diversity of the world’s population.
click the yellow text to reveal the definition
It’s important to ensure diversity and inclusivity in research so we can:
Avoid making existing differences in health worse.
Understand and solve complex health problems.
Ensure treatments work for different kinds of people.
Examples of conditions that are experienced differently:
Heart Conditions
Sickle Cell Disease
Prostate Cancer
Dementia
hover over each condition
Examples of treatments experienced differently:
Warfarin
Clopidogrel
hover over each treatment
What are underrepresented groups?
There is no single definition as it depends on the context! But some commonly shared characteristics include:
- Lower inclusion in research than we would expect based on population estimates.
- High healthcare needs which are not matched by the number of research opportunities available for the group.
- Important differences in how a group responds to or engages with health and care interventions compared to other groups, with research neglecting to address these differences.
Who is underrepresented in healthcare research?
Women
LGBTQI+ Communities
Ethnic Minorities
Disabled People
Asylum seekers, Refugees, Migrants
Homeless People
Geographic Disparities
Income Levels
What are the barriers to preventing people taking part in research?
Travel / Transport Barriers
Lack of Available Studies
Lack of Trust
Perceived Risk
Participation Asks too Much
Physical Barriers
Lack of Awareness
Negative Financial Impact
Language Barriers
Be Part of Research is a service to help people like you take part in research
click the logo to visit the website
See what it’s like: Reunited by research: how research trials make a difference to people's lives.
Be Part of Research matches volunteers to studies in nearly every major health condition and care service, which take place online or at locations near you and are based on your interests. Whatever your state of health, you can help find new and better ways to treat conditions and improve care. You can even take part as a healthy volunteer. Your family may have been particularly affected by a particular condition, or you may have experienced an illness and want to make life better for others living with it. Sign up to:
- Learn more about taking part in research.
- Search for studies to be a part of.
- Register to be contacted about studies in the future.
- Offer to be a volunteer.
You can also join Dementia Research
Register your interest on a free service which gives people access to national dementia research. It helps people with dementia, their carers or those who support them, and anyone over 18 interested in dementia research to make a difference and take part in vital research studies. Sign up today: www.joindementiaresearch.nihr.ac.uk - Once registered, your details will be stored securely and will be regularly checked to see if you match to studies. You can update your details at any time.
click the logo to visit the website
See what it’s like: Remember you can always talk to a member of your healthcare team about research taking place in your local GP practice or hospital.
Well done! You’ve reached the end of Module 2!
You’ve learned all about:
- What research participation is and its many benefits.
- Examples of underrepresented groups in research and some of the barriers to participation.
- How you can find out about research studies to take part in, for example by visiting Be Part of Research.
Here are some quick questions to absorb what you have learned.
Module 3: Public Involvement
What public involvement in research is and how it works.
Let's Go
What is public involvement in research?
Public involvement in research is an active partnership between patients, carers and members of the public with researchers that influences and shapes research. It improves the quality and relevance of research, while also supporting values like fairness, transparency and accountability. People who are affected by research have a right to have a say in it! It also empowers people who use health and social care services to influence research that impacts them. You might hear it referred to as PPIE - public and patient involvement and engagement.
Why does research involve the public?
What the experts say:
Research teams which involve patients and the public run better studies because:
- They are more relevant to study participants.
- They are designed in a way which is acceptable to participants.
- They provide a better experience of research.
- They have participant information which is understandable to those who take part.
- They have better communication of results to participants and the wider community at the end of the study.
click the bubble to reveal
click the bubble to reveal
What can involvement look like?
The spectrum of public involvement
Co-Production:
Consultation:
Where staff and public members work together and share responsibility from start to finish.
Asking public members for their views and using these views to inform decision-making.
User-Led:
Collaboration:
Public members design, undertake and disseminate the results of a project.
Active, on-going partnership with public members.
Here are some examples of how you could be involved at every stage of research
hover over each stage to see the answer
Identifying a research question
Evaluating impact
Designing the study
Sharing results
Gaining regulatory approval
Applying the findings
Analysing the data
Recruiting participants
Conducting the study
You may remember part of this diagram from the ‘Research in an NHS Context’ Module!
Click me to check out this example!
What can you expect from the researchers you work with?
hover over the words to reveal the answer
The UK Standards for Public Involvement set out what you can expect from the people who involve you in their work. The six standards set out what good public involvement looks like.
Inclusive Opportunities
Communication
Support and Learning
Working Together
Impact
Governance
What’s expected of you as a public contributor?
hover over the icons to see the answer
Why do the public choose to get involved in research?
click the icons to reveal the answer
click the icons to reveal the answer
Want to bring about change in the quality of care or to improve treatments either for themselves or for others with a similar conditions.
A way to have a 'voice' and influence the processes that affect people's lives.
An opportunity to 'give something back'.
To ensure the voice of their community / communities are represented in research.
How do you benefit from getting involved?
- Training
- Support
- Knowledge and Understanding
- Payment for Involvement
- Reimbursement of Expenses
Watch the video to find out more!
What does this public contributor say?
click the bubble to reveal
Where can you find out more about Public Involvement?
each text box links to website where you can find out more
Learning for Involvement
Starting Out Guide
Public Information Pack (PIP)
People in Research
UK Standards for Public Involvement
Well done! You’ve reached the end of Module 3!
You’ve learned all about:- What public involvement is and the important difference it makes to research at every stage.
- How you benefit from public involvement and what you can expect from the people who involve you in their research.
- Where to find more information if you’d like to get involved as a public contributor.
Here are some quick questions to absorb what you have learned.
You have completed all 3 modules! You've learned about:
Participation: What participation in research is, what happens and the benefits.
Research: What research is and how it works in the NHS.
Involvement: What public involvement in research is and how it works.
Download Certificate Here!
We hope to see you as part of research very soon!
If you have any questions, please contact:
North East London Research Engagement Network: hilarious.dejesus2@nhs.net
Barts Health NHS Trust: patientsinresearch.bartshealth@nhs.net
About this training: This training was made in collaboration with and Nifty Fox and was funded by NHS England and Barts Charity.
North East London Research Engagement Network
Tina is a 42-year-old woman from North London. She is a single mother of two young children and depends on extended family for childcare while working as a secretary at a local business. Although she has recently secured stable housing, she feels increasingly anxious about rising rent and the cost-of-living crisis.Over time, her worries have intensified, leading to moments of shortness of breath, blurred vision, and difficulty concentrating. A colleague suggests these symptoms may be anxiety or panic attacks, a comment Tina interprets as judgmental and implying she cannot cope.Due to time pressures and concerns about childcare, Tina does not seek help from a mental health charity or GP and continues to manage her anxiety alone.
- Research can provide breakthroughs in treatments, diagnosis and prevention, helping us to advance the nation’s healthcare. This can help the NHS and health and social care organisations make sure the best treatments that we know about, are being made available to people.
- We can also ensure they are providing the best value for money for the NHS.
Agencies and Organisations:Care Quality Commission Human Tissue Authority NHS England NHS England Digital
Professional Regulators: Health and Care Professions Council (HCPC) General Medical Council (GMC) Nursing and Midwifery Council (NMC)
https://www.hcpc-uk.org/
https://www.cqc.org.uk
https://www.hta.gov.uk
https://www.gmc-uk.org/
https://www.england.nhs.uk
https://www.nmc.org.uk/
https://digital.nhs.uk
Regulations: UK Framework for Health and Social Care Research The Medicines for Human Use (Clinical Trials) Regulations 2025 Human Medicines Regulations 2012
Human Tissue Act 2004 The Data Protection Act 2018 The Care Act 2014 Medical Devices Regulations 2002
- Local health and care services that are research-active may lead to better health outcomes for patients who use those services.
- Some studies have shown that patients who are not directly participating in healthcare research can still benefit from care in research-active hospitals.
- Local health services can better reflect their local communities and their needs if more people take part.
Researchers might want to design a study which could potentially speed up the recovery of a patient after surgery but which could prove more painful in the short term. Public/patients might feel the priority is to minimise the pain experienced by surgical patients. By talking to one another and sharing their thoughts, ideas and concerns, the researchers will be able to make changes to the ‘outcome measures’ that are most likely to be important to surgical patients.Your task may be to comment on information that has been written for patients and the public, such as:
- Information about research that’s underway to let people know the research is happening
- Posters, letters and articles being used to advertise the research project to people who might want to take part
- Patient information sheets – these explain what taking part in a research project will mean for the participants, so they can decide whether they want to do it
- Articles, reports and press releases that are used to share the results with patients and the public
Your task may be to comment on whether the information:
- Contains all the details that people need to understand the research
- Contains all the details that potential participants need to decide whether they want to take part
- Is written clearly and simply in a way that is easy to understand
- Is laid out in a format that is clear and easy to read
- Is produced in a format that is accessible to the target audience e.g. in large font, if the target audience is likely to have visual problems
- The evidence is carefully looked at and assessed to see, for example, how a new medicine compares with existing treatment options.
- NICE asks experts like healthcare professionals and patients to think about the impact of a new medicine.
- Based on all of this, NICE publishes guidance on whether a new medicine should be recommended for use in the NHS.
- If the answer is yes, NICE will produce further guidelines for use and access of the new medicine so it can be integrated into NHS practice safely.
"No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well." Professor Dame Sally Davies, Chief Medical Officer. (Foreword in Staley, 2009)
- Carefully reviewing the evidence from research studies to assess whether a new medicine or medical device is safe, effective, and of acceptable quality.
- If these standards are met, the MHRA grants a licence (marketing authorisation) allowing the product to be used in the UK.
- After approval, the MHRA continues to monitor safety to identify any side effects or issues, and can take regulatory action such as issuing safety alerts, recalls, or suspending licences if needed.
Their role is to make the UK a great place to do research where people have the opportunity to participate in research and feel safe doing so. The HRA must approve project-based research taking place in the NHS.In short, they protect and promote the interests of patients and the public in health and social care research.
In research, you might hear the term 'healthy volunteers'. These are people who don't have the health condition being studied. While that might sound unusual, healthy volunteers help researchers understand health conditions by providing information that can be compared with people who do have the condition. They also play an important role in studies exploring ways to prevent illnesses.
You can read more here
"No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well."Professor Dame Sally Davies, Chief Medical Officer. (Foreword in Staley, 2009)
Clinical trials of new drugs, treatments or devices need approval from the Medicines and Healthcare products Regulatory Agency (MHRA). The MHRA has power to inspect organisations conducting trials of this nature in the UK and indeed elsewhere in the Uk.
Marcel is a 35-year-old man who does not speak English and lived with joint pain and morning stiffness for months before being referred to a specialist, delayed by language barriers.When he was finally diagnosed with rheumatoid arthritis, communication difficulties meant he misunderstood how to manage his treatment. After becoming homeless, he lost contact with services and missed follow-up care. Without ongoing monitoring or support, his treatment stopped and his condition worsened, showing how instability and barriers to communication can undermine long-term health care.
- Learning more about their condition or health and how to look after it.
- Potentially accessing new treatments that aren’t currently available to them through standard care.
- Receiving a close level of care and monitoring of their health/condition.
- Research can also provide a voice for patients, members of the public, care home residents etc., as well as their families and staff whose views may have been previously unheard.
- Carefully reviewing the evidence from research studies to assess whether a new medicine or medical device is safe, effective, and of acceptable quality.
- If these standards are met, the MHRA grants a licence (marketing authorisation) allowing the product to be used in the UK.
- After approval, the MHRA continues to monitor safety to identify any side effects or issues, and can take regulatory action such as issuing safety alerts, recalls, or suspending licences if needed
Ali is a 21-year-old man who moved from Pakistan to East London with his family. He spends his days helping his father at a market stall and his evenings studying online, juggling work, education, and family duties.Living in an overcrowded flat, he notices his uncle becoming forgetful and constantly tired. Ali's heard of dementia and thinks this could be what's happening. Although worried, Ali feels unsure if his concerns are valid and doesn’t know what support exists. With no one else raising the issue and little time or guidance, he waits—leaving his uncle’s health needs unnoticed and unsupported.
"Public involvement is important, expected and possible in all types of health and social care research.” Health Research Authority, National Institute for Health and Care Research and host organisations across the UK (Shared Commitment to Public Involvement, 2025).
- Depending on the study, they may receive better support as a carer or family member supporting somebody with a condition.
- They can also learn more about their family member’s condition and may learn new ways of supporting them.
"Understanding the relevance/accuracy of feedback assists in my ongoing training. If I spend (my valuable!) time on providing feedback, I'd like to feel that my input is valued but more importantly, know whether my comments were taken on board, and if not, why not." (Reported in Mathie et al 2018. Reciprocal relationships and the importance of feedback in patient and public involvement. https://doi.org/10.1111/hex.12684)
Diversity: Reflecting the wider community, with people from a broad range of backgrounds represented. Inclusivity: An approach that welcomes people from different backgrounds, treats everyone fairly, values each person as an individual, and creates a sense of belonging.
RECs review applications for research and give an opinion about the proposed participation and whether the research is ethical.Overall they safeguard the rights, safety, dignity and well-being of people participating in research in the NHS
Healthcare Research Needs You!
Laura Evans
Created on February 13, 2026
Start designing with a free template
Discover more than 1500 professional designs like these:
View
Essential Business Proposal
View
Project Roadmap Timeline
View
Step-by-Step Timeline: How to Develop an Idea
View
Artificial Intelligence History Timeline
View
Microlearning: When to Use Chat, Meetings or Email
View
Magazine dossier
View
Microlearning: Graphic Design
Explore all templates
Transcript
Healthcare Research Needs You!
Learn more about how your contribution to healthcare research can:
LET’S GO
Funded by:
Project Team:
How to use these modules
Complete each of the three modules and look for instructions on each page which will lead you to further information. At the end of each module you will be asked to complete a short quiz! You will be asked to click or hover with your computer cursor over different icons and words throughout the modules.
These modules work best on a computer
Instructions will look like this Hover over the sign to the right to see an example
Why Does Healthcare Research Need You?
Click each avatar to see what health inequalities look like in everyday life
We need diverse groups of people to participate in healthcare research so that treatments, care, and services work for everyone. No matter where they live or what background they are from. Our health system experiences health inequalities. They are unfair, avoidable and systemic differences in health across the population and between different groups within society. These include how long people are likely to live, the health conditions they may experience and the care that is available to them.
Tina
Ali
Marcel
Right now, research participation doesn’t always reflect:
age, sex and other constitutional factors
Through this training, you’ll learn more about:
Participation: What participation in research is, what happens and the benefits.
Research: What research is and how it works in the NHS.
Involvement: What public involvement in research is and how it works.
All so you can improve not only your health, but that of your family, community and the whole country.
Module 1: Healthcare Research
What is healthcare research, and how does it work in the NHS?
Let's Go
Healthcare research is essential to improving the nation's health and well-being. It involves studies designed to test new treatments, understand diseases, and improve patient care.
Prevent
Diagnose
Treat
The different types of research
Hover on the bolded text for the definition
1. Studies that test the effects of treatments or interventions like medicines, devices, or procedures are called 2. Studies where researchers follow patients over time without changing anything about their environment or care, for example, observational studies 3. Studies where patient or carer experiences are explored through questionnaires, surveys, interviews, or focus groups, including 4. Studies where new or existing anonymised data sets are looked at 5. Studies where biological samples, like cells, are analysed
interventional studies.
ethnographic studies
Here’s how the research process works
Each stage is important to ensure that research is conducted responsibly and leads to improvements in health care.
hover over the text for the definition
Identifying a Question
Gathering Participant Feedback
Designing the study
Evaluating Impact
Finding Funding
Applying Findings
Getting Regulatory Approval
Conducting the Study
Analysing Data
Sharing Results
Who is involved in NHS research
hover over the image to see the answer
NHS research involves various key players:
Researchers
Participants
Healthcare Professionals
Patients and the public:
Universities
Pharmaceutical and medical device companies
Research Funders
Regulatory bodies such as independent Research Ethics Committees
Regulators are also involved in research to keep it safe
click the organisation to learn more
The NIHR is the main organisation responsible for funding and supporting healthcare research in the NHS. It is funded by the Department of Health and Social Care and plays a key role in ensuring research improves patient care.
Research Ethics Committee
What the NIHR does - the 4Is The NIHR drives life-changing research for the health and wealth of our society across 4 areas.
hover over the icons to learn more
But there are many other organisations, agencies, and regulations that help with overseeing and monitoring research
click the hand icon to learn more
What happens after research has taken place?
Click the boxes to reveal more
After research has taken place, several organisations play key roles in deciding whether a new medicine or medical device can be used in the NHS.
The National Institute for Health and Care Excellence (NICE) considers how a new medicine or medical device should be used in the NHS.
The MHRA - the people who check that research is right - has responsibility for the following
NICE has the following responsibilities
Well done! You’ve reached the end of Module 1!
You’ve learned all about: • The different types of research and steps in the research process. • Who is involved in research, including some of the key regulators ensuring all is kept safe. • What happens when a research study ends. Here are some quick questions to absorb what you have learned.
Module 2: Participation
What participation in research is, what happens and the benefits.
Let's Go
What is participation in research?
click on the bolded text for more info
Participation in research is where patients and take part in a research study. They are key players in NHS research who provide data, test new treatments, or complete surveys. These are just a couple of examples - there are many different types of research studies that people can take part in! You might remember some of the different types of research studies from the ‘Research in an NHS Context’ module.
volunteers
Where do research studies take place?
The NHS is keen for research to take place not only in hospitals and GP surgeries, but out in the local community too. Take a look at some examples below - they might surprise you!
Hospitals
GP Surgeries
Schools
Prisons
Faith Buildings
Community Settings
What are the benefits to people taking part in research?
click the text to see the answer
For people taking part
For the local community
For families and carers
For the country
What do people say about their experience?
hover over the people to see the answer
It's important to remember that some people will have less positive experiences, but researchers and their teams are always learning and finding ways to improve! Participants are welcome to speak to their research team about any concerns and to share honest feedback.
Explore the videos to learn more!
What’s the process for taking part in research?
hover over each stage to see the answer
Here’s an example of the steps you would go through if you were taking part in a clinical trial! Similar processes would be followed for other types of research studies too, but some of the terms used may differ slightly.
Identification
Screening
Consent
Trial Period
Follow-Up
How do people find studies to take part in?
How people are asked to take part in research depends on the type of study. Some people may actively look for studies to join by speaking with their healthcare team, or family, friends and trusted community group leaders. They may also respond to adverts posted on online noticeboards on: You’ll read more about the ‘Be Part of Research’ service in ‘Module 2’ Keep an eye out for it! Others might be contacted by their healthcare providers and asked if they want to join a study. Healthcare providers can speak to patients directly, send them a letter about the study, or, with their permission, let the research team contact suitable patients.
National Institute for Health and Care Research (NIHR) websites such as Be Part of Research.
University websites
Why your participation matters
Remember, we spoke about health inequalities right at the beginning? Your participation in research helps the NHS address unfair, unavoidable and systemic differences in health across the country. With more representative people taking part, we can build better treatments and diagnostic tools for more of the population.
Better treatments and diagnostic tools for more of the population
Better able to tackle health inequalities
More representative research
How your participation helps
Medical science needs the participation of people from all kinds of backgrounds to ensure new treatments work for everyone. Clinical research can’t afford to ignore the diversity of the world’s population.
click the yellow text to reveal the definition
It’s important to ensure diversity and inclusivity in research so we can:
Avoid making existing differences in health worse.
Understand and solve complex health problems.
Ensure treatments work for different kinds of people.
Examples of conditions that are experienced differently:
Heart Conditions
Sickle Cell Disease
Prostate Cancer
Dementia
hover over each condition
Examples of treatments experienced differently:
Warfarin
Clopidogrel
hover over each treatment
What are underrepresented groups?
There is no single definition as it depends on the context! But some commonly shared characteristics include:
Who is underrepresented in healthcare research?
Women
LGBTQI+ Communities
Ethnic Minorities
Disabled People
Asylum seekers, Refugees, Migrants
Homeless People
Geographic Disparities
Income Levels
What are the barriers to preventing people taking part in research?
Travel / Transport Barriers
Lack of Available Studies
Lack of Trust
Perceived Risk
Participation Asks too Much
Physical Barriers
Lack of Awareness
Negative Financial Impact
Language Barriers
Be Part of Research is a service to help people like you take part in research
click the logo to visit the website
See what it’s like: Reunited by research: how research trials make a difference to people's lives.
Be Part of Research matches volunteers to studies in nearly every major health condition and care service, which take place online or at locations near you and are based on your interests. Whatever your state of health, you can help find new and better ways to treat conditions and improve care. You can even take part as a healthy volunteer. Your family may have been particularly affected by a particular condition, or you may have experienced an illness and want to make life better for others living with it. Sign up to:
You can also join Dementia Research
Register your interest on a free service which gives people access to national dementia research. It helps people with dementia, their carers or those who support them, and anyone over 18 interested in dementia research to make a difference and take part in vital research studies. Sign up today: www.joindementiaresearch.nihr.ac.uk - Once registered, your details will be stored securely and will be regularly checked to see if you match to studies. You can update your details at any time.
click the logo to visit the website
See what it’s like: Remember you can always talk to a member of your healthcare team about research taking place in your local GP practice or hospital.
Well done! You’ve reached the end of Module 2!
You’ve learned all about:
- How you can find out about research studies to take part in, for example by visiting Be Part of Research.
Here are some quick questions to absorb what you have learned.Module 3: Public Involvement
What public involvement in research is and how it works.
Let's Go
What is public involvement in research?
Public involvement in research is an active partnership between patients, carers and members of the public with researchers that influences and shapes research. It improves the quality and relevance of research, while also supporting values like fairness, transparency and accountability. People who are affected by research have a right to have a say in it! It also empowers people who use health and social care services to influence research that impacts them. You might hear it referred to as PPIE - public and patient involvement and engagement.
Why does research involve the public?
What the experts say:
Research teams which involve patients and the public run better studies because:
click the bubble to reveal
click the bubble to reveal
What can involvement look like?
The spectrum of public involvement
Co-Production:
Consultation:
Where staff and public members work together and share responsibility from start to finish.
Asking public members for their views and using these views to inform decision-making.
User-Led:
Collaboration:
Public members design, undertake and disseminate the results of a project.
Active, on-going partnership with public members.
Here are some examples of how you could be involved at every stage of research
hover over each stage to see the answer
Identifying a research question
Evaluating impact
Designing the study
Sharing results
Gaining regulatory approval
Applying the findings
Analysing the data
Recruiting participants
Conducting the study
You may remember part of this diagram from the ‘Research in an NHS Context’ Module!
Click me to check out this example!
What can you expect from the researchers you work with?
hover over the words to reveal the answer
The UK Standards for Public Involvement set out what you can expect from the people who involve you in their work. The six standards set out what good public involvement looks like.
Inclusive Opportunities
Communication
Support and Learning
Working Together
Impact
Governance
What’s expected of you as a public contributor?
hover over the icons to see the answer
Why do the public choose to get involved in research?
click the icons to reveal the answer
click the icons to reveal the answer
Want to bring about change in the quality of care or to improve treatments either for themselves or for others with a similar conditions.
A way to have a 'voice' and influence the processes that affect people's lives.
An opportunity to 'give something back'.
To ensure the voice of their community / communities are represented in research.
How do you benefit from getting involved?
- Training
- Support
- Knowledge and Understanding
- Payment for Involvement
- Reimbursement of Expenses
Watch the video to find out more!What does this public contributor say?
click the bubble to reveal
Where can you find out more about Public Involvement?
each text box links to website where you can find out more
Learning for Involvement
Starting Out Guide
Public Information Pack (PIP)
People in Research
UK Standards for Public Involvement
Well done! You’ve reached the end of Module 3!
You’ve learned all about:- What public involvement is and the important difference it makes to research at every stage.
- How you benefit from public involvement and what you can expect from the people who involve you in their research.
- Where to find more information if you’d like to get involved as a public contributor.
Here are some quick questions to absorb what you have learned.You have completed all 3 modules! You've learned about:
Participation: What participation in research is, what happens and the benefits.
Research: What research is and how it works in the NHS.
Involvement: What public involvement in research is and how it works.
Download Certificate Here!
We hope to see you as part of research very soon!
If you have any questions, please contact:
North East London Research Engagement Network: hilarious.dejesus2@nhs.net
Barts Health NHS Trust: patientsinresearch.bartshealth@nhs.net
About this training: This training was made in collaboration with and Nifty Fox and was funded by NHS England and Barts Charity.
North East London Research Engagement Network
Tina is a 42-year-old woman from North London. She is a single mother of two young children and depends on extended family for childcare while working as a secretary at a local business. Although she has recently secured stable housing, she feels increasingly anxious about rising rent and the cost-of-living crisis.Over time, her worries have intensified, leading to moments of shortness of breath, blurred vision, and difficulty concentrating. A colleague suggests these symptoms may be anxiety or panic attacks, a comment Tina interprets as judgmental and implying she cannot cope.Due to time pressures and concerns about childcare, Tina does not seek help from a mental health charity or GP and continues to manage her anxiety alone.
Agencies and Organisations:Care Quality Commission Human Tissue Authority NHS England NHS England Digital
Professional Regulators: Health and Care Professions Council (HCPC) General Medical Council (GMC) Nursing and Midwifery Council (NMC)
https://www.hcpc-uk.org/
https://www.cqc.org.uk
https://www.hta.gov.uk
https://www.gmc-uk.org/
https://www.england.nhs.uk
https://www.nmc.org.uk/
https://digital.nhs.uk
Regulations: UK Framework for Health and Social Care Research The Medicines for Human Use (Clinical Trials) Regulations 2025 Human Medicines Regulations 2012
Human Tissue Act 2004 The Data Protection Act 2018 The Care Act 2014 Medical Devices Regulations 2002
Researchers might want to design a study which could potentially speed up the recovery of a patient after surgery but which could prove more painful in the short term. Public/patients might feel the priority is to minimise the pain experienced by surgical patients. By talking to one another and sharing their thoughts, ideas and concerns, the researchers will be able to make changes to the ‘outcome measures’ that are most likely to be important to surgical patients.Your task may be to comment on information that has been written for patients and the public, such as:
- Information about research that’s underway to let people know the research is happening
- Posters, letters and articles being used to advertise the research project to people who might want to take part
- Patient information sheets – these explain what taking part in a research project will mean for the participants, so they can decide whether they want to do it
- Articles, reports and press releases that are used to share the results with patients and the public
Your task may be to comment on whether the information:"No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well." Professor Dame Sally Davies, Chief Medical Officer. (Foreword in Staley, 2009)
Their role is to make the UK a great place to do research where people have the opportunity to participate in research and feel safe doing so. The HRA must approve project-based research taking place in the NHS.In short, they protect and promote the interests of patients and the public in health and social care research.
In research, you might hear the term 'healthy volunteers'. These are people who don't have the health condition being studied. While that might sound unusual, healthy volunteers help researchers understand health conditions by providing information that can be compared with people who do have the condition. They also play an important role in studies exploring ways to prevent illnesses.
You can read more here
"No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well."Professor Dame Sally Davies, Chief Medical Officer. (Foreword in Staley, 2009)
Clinical trials of new drugs, treatments or devices need approval from the Medicines and Healthcare products Regulatory Agency (MHRA). The MHRA has power to inspect organisations conducting trials of this nature in the UK and indeed elsewhere in the Uk.
Marcel is a 35-year-old man who does not speak English and lived with joint pain and morning stiffness for months before being referred to a specialist, delayed by language barriers.When he was finally diagnosed with rheumatoid arthritis, communication difficulties meant he misunderstood how to manage his treatment. After becoming homeless, he lost contact with services and missed follow-up care. Without ongoing monitoring or support, his treatment stopped and his condition worsened, showing how instability and barriers to communication can undermine long-term health care.
Ali is a 21-year-old man who moved from Pakistan to East London with his family. He spends his days helping his father at a market stall and his evenings studying online, juggling work, education, and family duties.Living in an overcrowded flat, he notices his uncle becoming forgetful and constantly tired. Ali's heard of dementia and thinks this could be what's happening. Although worried, Ali feels unsure if his concerns are valid and doesn’t know what support exists. With no one else raising the issue and little time or guidance, he waits—leaving his uncle’s health needs unnoticed and unsupported.
"Public involvement is important, expected and possible in all types of health and social care research.” Health Research Authority, National Institute for Health and Care Research and host organisations across the UK (Shared Commitment to Public Involvement, 2025).
"Understanding the relevance/accuracy of feedback assists in my ongoing training. If I spend (my valuable!) time on providing feedback, I'd like to feel that my input is valued but more importantly, know whether my comments were taken on board, and if not, why not." (Reported in Mathie et al 2018. Reciprocal relationships and the importance of feedback in patient and public involvement. https://doi.org/10.1111/hex.12684)
Diversity: Reflecting the wider community, with people from a broad range of backgrounds represented. Inclusivity: An approach that welcomes people from different backgrounds, treats everyone fairly, values each person as an individual, and creates a sense of belonging.
RECs review applications for research and give an opinion about the proposed participation and whether the research is ethical.Overall they safeguard the rights, safety, dignity and well-being of people participating in research in the NHS