The GM Care Record is part of something much bigger

The information in the GM Care Record helps us understand the answers to some of the most pressing health questions affecting our region, such as those related to COVID-19.

That’s because de-personalised data, i.e. health and care information whereby your name, NHS number and address has been removed, will be used for highly selective and world-leading research at Greater Manchester universities.

So far, the approved studies are limited to those that tackle specific topics related to how different groups within our regions’ 2.8 million citizens have been affected by COVID-19.

7

Research studies have
been approved to use
GM Care Record data

15

More are under
consideration

What are the benefits of facilitating vital research in Greater Manchester?

First and foremost, the GM Care Record has been established to ensure you and your family receive tailored, individual care and treatment.

However, this incredible resource is also an essential part of informing the future of our regions’ healthcare services. Helping to determine what support and funding is required, for which people and in what way.

All of the information that could identify a person, including name, NHS number or address, is removed before university researchers can use the data. This means that you can be confident that the health and care data provided will only reflect trends in people who have similar care needs, rather than identifying individuals.

By using de-personalised health data from the GM Care Record to study highly specific research questions, such as why those with type 2 diabetes are of increased risk of becoming seriously unwell from COVID-19, our regions’ frontline health and social care workers will be better prepared to make positive changes to health services in Greater Manchester.

Do you work with industry or other non-NHS partners?

We never sell or share any data from the GM Care Record to private industry for profit or their own private use.
 
There may be times in future when the NHS or care sector in Greater Manchester could form a partnership with an organisation outside the NHS such as a company that develops new technology or medicines to improve local services, or to better meet the health and care needs of local people.  An example of this might be working with a pharmaceutical company to understand how new types of drugs could support the better treatment of diseases. Looking at wider data from across Greater Manchester could also help us to get a better understanding of your future needs, and we may sometimes work with local universities to develop research studies around this.

Any use of the GM Care Record involving a non-NHS partner would be subject to full openness, transparency and scrutiny. The GM Care Record Expert Review Group, which is made up of people working for GPs, the NHS and Councils in Greater Manchester, would review every proposal to ensure that it was fair, suitable and feasible within the parameters agreed with the public and those who hold this data such as GP practices (the data controllers).

Proposals would also be further reviewed by our Oversight and Scrutiny Committee, which vitally includes members of the public, to ensure full transparency, and that we are acting in accordance with our legal requirements and the public interest.


What types of research studies are currently being approved to access the GM Care Record?



At the moment we’re using the GM Care Record data only for COVID-19 related research, and it has been tremendously valuable to answer all those questions that we have around COVID-19 and how it has impacted our citizens and our health services. I hope in the future we can also use the information in the GM Care Record for other health questions and to help us create better health policies and services for the GM population.

Niels Peek
Professor of Health Informatics, The University of Manchester

How are COVID-19 research studies approved for accessing the GM Care Record?

Whilst the GM Care Record could provide insight on an enormous range of health-related research studies, we need to be sure that only those that absolutely require support from real-time patient health and care information are approved.

To do this, a thorough review process has been put in place with an expert panel, responsible for authorising requests to use GM Care Record data for COVID-19 research.

This has been a result of close collaboration between Greater Manchester’s clinical-academic community, health and care partners and citizens from our region.

You can choose to opt out of your de-personalised health and care information from being used for research and planning. More information about this can be found here.

Find out more about the governance arrangements in Greater Manchester, that ensure full transparency over who can access GM Care Record data and that it’s used both legally and ethically, here.

Approved COVID-19 research studies

Research Focus

The equitability of the UK COVID-19 vaccination strategy

Principal Investigator

Dr Ruth Watkinson, The University of Manchester

Summary

The government plan for the roll out of the COVID-19 vaccines aims to protect the most vulnerable first, giving priority access to people with the highest risk of becoming seriously ill or dying from COVID-19.

The GM Care Record will make it possible to test whether the government vaccination plan meets the goal of giving equal priority to people with equal vulnerability to COVID-19.

Number of researchers accessing the GM Care Record: 4

Research Focus

Healthcare utilisation across Greater Manchester during the COVID-19 Pandemic

Principal Investigator

Dr. Stuart Grant, The University of Manchester

Summary

The GM Care Record will be used to study how the healthcare system in Greater Manchester has been utilised by our regions’ citizens throughout the pandemic.

For example, how busy GP surgeries are, how many routine operations are conducted, and how full the hospitals are. This will lead to important insights into any bottlenecks in the system and help with planning for subsequent waves and future pandemics.

Number of researchers accessing the GM Care Record: 2

Research Focus

COVID-19 incidence, COVID-19 related hospital admission and death in cancer patients in Greater Manchester.

Principal Investigator

Professor Corinne Faivre-Finn, The University of Manchester

Summary

The GM Care Record will be used to determine the risks and factors associated with a COVID-19 diagnosis, hospital admission and death in cancer patients.

This work will provide an overall picture of the COVID-19 risk in all GM patients with cancer and help inform care decisions for cancer patients regarding treatment and need for shielding.

Number of researchers accessing the GM Care Record: 3

Testimonial

The GM Care Record will have a direct impact on the quality and precision of care we are able to provide patients, particularly those with complex needs across multiple specialties. Sharing this information has never been more important as it will greatly aid clinical decision making and will reduce the burden on both patients on clinicians, freeing up valuable time to care.

Karen James OBE
Chief Executive, Tameside Integrated Care NHS Foundation Trust & member of the GM Provider Federation Board

Research Focus

Evaluation of why having type 2 diabetes greatly increases the risk of becoming seriously unwell or dying with COVID-19

Principal Investigator

Dr Adrian Heald, Salford Royal Hospital and The University of Manchester

Summary

The plan is to compare all people who have diabetes in Greater Manchester and were alive on 1 January 2020, who became seriously ill and/or died with COVID-19, with those with diabetes who were infected with COVID-19 and did not become seriously unwell.

This will be done by analysis of their medical history, allergy status, COVID-19 test status, prescribed medication, ethnicity and socio-demographic situation.

This will determine what is different about the people with known diabetes who became seriously ill or die, versus those that had a mild infection or no symptoms at all.

Number of researchers accessing
the GM Care Record: 3

Research Focus

Frequency of self-harm episodes in primary care records in GM: retrospective cohort study examining the impact of COVID-19

Principal Investigator

Dr. Sarah Steeg, The University of Manchester

Summary

In the Spring 2020 wave of the pandemic, fewer people sought help for self-harm. It is not yet known if this is also happened through Winter 2020-2021 as the COVID-19 pandemic continued.

The GM Care Record will be used to find out if the numbers of people seeking help following self-harm during the Winter months followed a similar pattern and whether there are differences between those who sought help and those who did not. This will help us to understand if health services are meeting people’s needs and if any groups need greater attention and enhanced support.

Number of researchers accessing
the GM Care Record: 2

Research Focus

Caught in the cross-
fire of COVID-19 – opportunities to improve practice and reduce harm in patients with rheumatoid arthritis taking methotrexate

Principal Investigator

Jenny Humphreys, The University of Manchester

Summary

Rheumatoid arthritis (RA) is a long-term inflammatory disease that requires treatment with medications to suppress the immune system, such as Methotrexate. Patients with
RA taking these medications need to have monitoring blood tests, but how often this should take place is not yet known.

During the COVID-19 pandemic, routine blood tests were impacted for RA patients and the National Institute for Health and Care Excellence (NICE) issued urgent guidelines which said that the gap between monitoring blood tests could be increased in patients who are on stable treatment.

NICE would now like to improve the research evidence supporting these guidelines using data from the GM Care Record.

Number of researchers accessing
the GM Care Record: 2

Research Focus

Examining health disparities in relation to COVID-19 for people with mental illness

Principal Investigator

Dr Joseph Firth, The University of Manchester

Summary

Along with poor mental health, people with mental illness experience much worse physical health than the general population. People with mental illness have twice the risk of obesity, diabetes and cardiovascular diseases, which collectively contribute to shortening life expectancy by around 15 years.

The COVID-19 pandemic hasintroduced into the UK a new ‘platform’ for potentially fatal health inequalities for people with mental illness. Early studies internationally have suggested that people with mental illness may be at increased risk of catching and dying from the virus. Nonetheless, it is unclear the extent to which people with mental illness in the UK are unequally affected by COVID-19, or why this may be the case.

Therefore, this research project will examine the differences in COVID-19 related outcomes between people with mental illness and the general population. We will examine COVID-19 related infections, vaccinations, hospitalisations, and deaths. We will also look at factors which may account for this, such as demographic characteristics, social settings (i.e. locality), prescribed medications, co-existing health conditions, and vaccination access/uptake.

Number of researchers accessing
the GM Care Record: 2



The Future of Research

The future of healthcare is more connected, more data driven and more evidence-based.

Currently, the GM Care Record data is being used for COVID-19 related research only.

Yet despite being a relatively new resource, the immeasurable benefits of the GM Care Record are clear. It has already helped to better plan our services and guide funding and support within our region in the response to the COVID-19 crisis.

We’ve only scratched the surface, but this success gives us assurance that in the future, we will be able use the health and care information in the GM Care Record to answer other health questions, creating better health policies and services for the Greater Manchester population.