All NHS organisations are expected to participate and support health and care research. Conducting high-quality clinical research helps us to keep improving NHS care by finding out which treatments work best. All the practices within Suffolk Primary Care are committed to clinical research. The dedicated Suffolk Primary Care research team may look at your health records to check whether you are suitable to take part in a research study before asking you whether you are interested or sending you a letter on behalf of the researcher. For more information about how your information may be used in research and your rights, please visit https://www.hra.nhs.uk/information-about-patients/

Research in the NHS helps us increase our knowledge about human health and wellbeing so we can:

  • Develop life changing treatments
  • Diagnose disease earlier and more accurately
  • Prevent people from developing conditions
  • Improve health and care for future generations
  • Improve quality of life for all people

You may be approached by your GP practice about a study if you meet the eligibility criteria for the trial. We have undertaken studies for patients with a number of conditions including stroke, chronic kidney disease, diabetes, chronic obstructive pulmonary disease (COPD) as well as for indigestion and reflux. If you do receive an invitation to take part in a study the research team at Suffolk Primary Care are very happy to talk to you about the study in more detail and provide further information if you are interested in taking part.

Our patients tell us they like being part of research. Following the 2019/2020 CRN Eastern Participant Research Experience Survey, patients have said they have taken part in research because:

  • It helps to improve treatments and outcomes for future generations
  • They want to give something back to the NHS
  • To learn so much more about their own condition
  • They feel fortunate to have the opportunity

Join a COIVD-19 Clinical Trial

The PRINCIPLE trial aims to find treatments that reduce hospital admission and improve symptoms for people with COVID-19

You could be eligible to join if you have had these symptoms for fewer than 15 days:
· new continuous cough or high temperature or a loss of, or change in, normal sense of taste or smell
· OR have a positive test for SARS-Co-V2 infection with COVID-19 symptoms in the past 14 days
· You are aged 50 to 64 with a pre-existing illness
· You are aged 65 and above
· To find out more take a look at the study website or contact the PRINCIPLE study team directly on principle@phc.ox.ac.uk • 0800 138 0880

Be a part of COVID-19 Vaccine research

Sign up to the new NHS Covid-19 vaccine research registry – it is available for everyone to join. The registry has been developed in partnership between the National Institute for Health Research (NIHR) and NHS Digital.
The registry will help large numbers of people be recruited into vaccine studies and hopefully lead to an effective vaccine being identified and made available in the UK against COVID-19. For more information: https://www.nhs.uk/sign-up-to-be-contacted-for-research

 

Clinical research studies that Suffolk Primary Care practices are currently involved in:

CLIMB: National Health Data Consent Survey

The CLIMB study is a survey which is looking at how the NHS uses patient data. The survey is looking for views from the general public as to their thoughts on how NHS data should be shared, what consent should be given and who should share health records. For more information please see the video below. A link to the survey can be found here: https://www.climbproject.org.uk/consentsurvey

attack.jpg ATTACK Aspirin to target arterial events in Chronic Kidney Disease

is a randomised trial run by the University of Southampton to assess the effectiveness of low-dose aspirin to prevent cardiovascular disease in adult patients with reduced kidney function who have not previously had a heart attack or stroke. The aim of the study is to determine whether the benefits of aspirin outweigh any risks in this group of patients. This study has come as a result of recommendations for research in the 2014 NICE CKD Guidelines and it is anticipated that over 25,000 people will be recruited to the study across the UK. This study is being run in all of our of Suffolk Primary Care practices in a rolling programme.

 

glow.jpg Glucose Lowering through Weight Management.

The University of Cambridge GLoW (Glucose-Lowering through Weight management) trial is aimed at people who have been diagnosed with Type 2 diabetes within the last three years. The GLoW trial will evaluate two programmes which support people with Type 2 Diabetes to improve their diet and physical activity to improve their health. The evidence is that people who lose weight, improve their diet and increase their physical activity reduce the risk of developing health problems associated with diabetes such as heart attack and stroke. The aim of the GLoW study is to determine which programme is the better way for the NHS to improve patient’s health.

How to find out more about research:

bepartofresearch.jpg
‘Be part of research’ helps you find out about health and social care research that is taking place across the UK and provides opportunities to take part in research. https://bepartofresearch.nihr.ac.uk/

dementia logo.png

Dementia affects more than 850,000 people in the UK. Research is the best way to make a difference. Registering with Join Dementia Research is the first step to getting involved in supporting research studies across the UK. Anyone over the age of 18 can sign up, including:
· People with dementia or memory problems
· Carers for people with dementia or memory problems
· Anyone else who is interested
You can also sign up on behalf of someone else, providing that you have their consent. https://www.joindementiaresearch.nihr.ac.uk/

Links for research:

NIHR: Involve. NHS Database of opportunities for members of the public to get involved in research. https://www.peopleinresearch.org
 
Patient information for health care research: keeping your information safe https://www.hra.nhs.uk/information-about-patients/

Patient Information and health and care research

All NHS organisations (including Health & Social Care in Northern Ireland) are expected to participate and support health and care research. The Health Research Authority and government departments in Northern Ireland, Scotland and Wales set standards for NHS organisations to make sure they protect your privacy and comply with the law when they are involved in research. Our research ethics committees review research studies to make sure that the research uses of data about you are in the public interest, and meet ethical standards.

Health and care research may be exploring prevention, diagnosis or treatment of disease, which includes health and social factors in any disease area. Research may be sponsored by companies developing new medicines or medical devices, NHS organisations, universities or medical research charities. The research sponsor decides what information will be collected for the study and how it will be used.

Health and care research should serve the public interest, which means that research sponsors have to demonstrate that their research serves the interests of society as a whole. They do this by following the UK Policy Framework for Health and Social Care Research. They also have to have a legal basis for any use of personally-identifiable information.

How patient information may be used for research

When you agree to take part in a research study, the sponsor will collect the minimum personally-identifiable information needed for the purposes of the research project. Information about you will be used in the ways needed to conduct and analyse the research study. NHS organisations may keep a copy of the information collected about you. Depending on the needs of the study, the information that is passed to the research sponsor may include personal data that could identify you. You can find out more about the use of patient information for the study you are taking part in from the research team or the study sponsor. You can find out who the study sponsor is from the information you were given when you agreed to take part in the study.

For some research studies, you may be asked to provide information about your health to the research team, for example in a questionnaire. Sometimes information about you will be collected for research at the same time as for your clinical care, for example when a blood test is taken. In other cases, information may be copied from your health records. Information from your health records may be linked to information from other places such as central NHS records, or information about you collected by other organisations. You will be told about this when you agree to take part in the study.

Keeping information for future research

Information about you that is collected during a research study may be kept securely to be used in future research in any disease area, including research looking at social and economic factors affecting health. This may include combining it with information about you held by other health or government organisations such as NHS Digital. Usually the information is combined together by matching information that has the same NHS number. Doing this makes maximum use of the information you have provided and allows researchers to discover more.

Researchers may not be able to specify all the possible future uses of the information they keep. It could include providing the information to other researchers from NHS organisations, universities or companies developing new treatments or care. Wherever this happens it will be done under strict legal agreements. The information about you will be depersonalised wherever possible so that you cannot be identified. Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee.

On rare occasions NHS organisations may provide researchers with confidential patient information from your health records when we are not able to seek your agreement to take part in the study, for example because the number of patients involved is too large or the NHS organisation no longer has your contact details. Researchers must have special approval before they can do this.

Depending on your location

Further information is available, depending on where in the UK you live:

England

In England you can register your choice to opt out via the NHS website . If you do choose to opt out you can still agree to take part in any research study you want to, without affecting your ability to opt out of other research. You can also change your choice about opting out at any time.

Northern Ireland

If you would like to find out more about how and why your information is used, including for research purposes, please visit the Department of Health website.

Scotland

Members of the public in Scotland have their rights and responsibilities set out in the Patients Rights (Scotland) Act 2011. For information on confidentiality of data (including in research) please visit the NHS Inform website.

Wales

If you would like to find out more about how and why your information is used, including for research purposes, please visit NHS Direct Wales.

What to do if there is a problem

If you wish to raise a complaint on how any research organisation has handled your personal data, you can contact the relevant Data Protection Officer who will investigate the matter. If you are not satisfied with their response or believe they are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

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