The GM Care Record is part of something much bigger

The information in the GM Care Record helps us to understand some of the most pressing health issues affecting our city-region. 

That’s because your de-identified data, i.e. health and care information whereby your name, NHS number and address has been removed, is being used for highly selective and world-leading research with our clinical, academic and industry partners in Greater Manchester, including our region’s universities and within the NHS.

However, we’ll soon be able to use it to understand many other big health challenges that are affecting the communities where we live. Such as why Greater Manchester has such a high incidence of long-term health conditions – meaning that people have a shorter life expectancy and can expect to experience poorer health at a younger age, than the rest of the UK.

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COVID-19 research studies approved using de-identified information from the GM Care Record

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.

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


How are 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 studies that absolutely require support from patient health and care information are approved.

To do this, a thorough review process has been put in place with an expert panel created, called the Secondary Uses and Research Group. This group includes data controllers from across the health and care system, GPs, academics, researchers, information governance experts, and most importantly, public members.

The group provides expert advice and guidance on the appropriate use of data for research and planning is also responsible for authorising all requests to use GM Care Record data.


What types of research studies have been approved to access the GM Care Record?

During the pandemic, we used de-identified patient information from the GM Care Record only for COVID-19 related research, and it has been hugely valuable in helping to answer some of the important questions that we had about COVID-19 and how it impacted our citizens and health and care services in Greater Manchester. More information about these studies can be found in the COVID-19 section towards the bottom of this page.

We’re also planning to the use the information in the GM Care Record to answer other health questions and to help us create better health policies and services for Greater Manchester’s citizens.


How do you keep information for research secure?

In Greater Manchester, we’re creating a ‘Secure Data Environment’ to ensure data is kept secure when it’s used for health and care research.

Secure Data Environments (SDEs) are highly secure computing environments that provide access to health and care data for approved researchers to use only.

SDEs put virtual walls around the data to ensure that users can only access data that they are approved for, and provide secure access to analytical and statistical tools for conducting research.

Imagine an SDE as a glass box in a research laboratory. The material being studied is safely stored inside the box and cannot be removed, but can be examined securely by those who have been approved, for the purposes of research.

The data being studied in the SDE is always de-identified  and cannot be used to identify you as an individual. Instead, it allows researchers to explore health trends at a group or population level to help us tackle the big health questions facing our region.

You can read more about the development of GM’s Secure Data Environment for population health research here.

In the short film below, Dr. Richard Williams describes the way in which deidentified patient information is kept safe and secure using GM’s Secure Data Environment for population health research.


We’re working closely with researchers on a number of studies to test the use of Greater Manchester’s SDE. These studies include:

Understanding of the clinical usefulness of preventative pharmacogenetic testing across Greater Manchester.

We know that some medications work well for some patients and not for others, and some patients may experience bad reactions whilst others may experience no side effects at all. This research aims to understand if using a person’s genetic information to improve which medicines are selected and their dose – known as pharmacogenetics, can help – focussing on statins (for reducing Cholesterol), two types of anti- depressant, and proton pump inhibitors (prescribed for ingestion, heartburn and acid reflux).

Optimising lung cancer screening for individuals from underserved communities within Greater Manchester.

Lung cancer is the UK’s leading cause of cancer death. Screening can save lives by finding lung cancer early. However, people at risk of lung cancer are also at risk of dying from other diseases. This study aims to understand who would benefit most from screening and in particular, whether people with multiple diseases would.

Long-term opioid use and associated adverse consequences in patients with chronic-non cancer pain in Greater Manchester.

Opiate-based medications such as codeine are often prescribed as they can be an effective way of managing long-term, non-cancer pain. However, they can cause other issues such as bone fracture hospitalisation, substance misuse and death. This research aims to understand the patterns of opiate prescribing which can lead to this and how some patients have had their opiate medications successfully reduced – supporting GP’s and NHS policymakers to improve treatment and care for patients.

Understanding and addressing socio-economic inequality within the quality and safety of care for people living with dementia.

There is evidence that people from more socio-economically deprived areas with dementia may receive lower quality care while living with the condition, than people who are wealthier. This study aims to explore how dementia primary care may be different for people with socio-economic factors.

Exploring Prostate and Breast Cancers in Greater Manchester: A study of Ethnic and Socioeconomic Disparities.

This research aims to solve the lack of genetic data on cancer in diverse ethnic groups, which may be negatively affecting how we understand and treat cancer in these communities. It aims to uncover how factors such as ancestry, socioeconomic status and environment might connect to inequalities in personalised care.

Uptake of annual health checks in primary care for patients diagnosed with Severe Mental Illnesses (SMIs) in Greater Manchester (GM).

People with SMIs, such as schizophrenia and bipolar disorder are more likely to have physical health problems and die up to twenty years younger than the general population. This study will explore how receiving good care from their GPs may help people with SMIs to better manage their physical health and live longer.

Investigating the relationship between HRT prescribing and health care utilisation.

Nearly 600,000 women in Greater Manchester are coping with menopause. Recent campaigns from celebrities such as Davina McCall have increased the demand for services and treatment such as HRT, potentially leading to an increase in referrals to hospital specialists and causing more pressure on these services. This research aims to use the data to think about improvements that could be made to menopause care.

Health Outcomes in systemic Lupus erythematosus and their Determinants across Greater Manchester (HOLD-GM).

This research aims to find health inequalities in lupus patients, which may also exist in other similar diseases. It predicts that social reasons may be why some lupus patients suffer more than others, and understanding this could help to design improvements to the NHS and general social policy.

Exploring the early impacts of virtual wards in Greater Manchester.

Greater Manchester aims to have 1,400 virtual wards (hospital at home) ‘beds’ by December 2023 – but there isn’t much evidence on the benefits and risks of this on patients, carers, and the healthcare system – as well as its impact on health inequalities. This research aims to explore more about the benefits and risks of virtual wards in Greater Manchester.


We never sell or share any patient information to industry for profit or their own 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 better treatment of diseases. Looking at wider data from across Greater Manchester could also help us get a better understanding of your future needs, and we may work with local universities to develop research studies related to this.


At the moment we’ve only used GM Care Record data 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


The Future of Research

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

Up until now, de-identified patient information has only been used for COVID-19 related research only.

Yet despite being a relatively new resource, the immeasurable benefits of this 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 pandemic.

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




COVID-19 research studies and results using deidentifed patient information from the GM Care Record

A lady talking to a man

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

This research project will examine the differences in COVID-19 related outcomes between people with mental illness and the general population. COVID-19 related infections, vaccinations, hospitalisations and deaths will be investigated along with factors which may account for this. These may include demographic characteristics, prescribed medications, co-existing health conditions and vaccination access/uptake.

Number of researchers accessing the GM Care Record: 2

STATUS: CompletE

Results of Study

The research found that people with certain mental illnesses were significantly more likely to get vaccinated against COVID-19 than the general population.

Using the GM Care Record, a comparison was made in the vaccination rates of a sample of 1,152,831 adults with and without severe mental illness.

The proportion of people who received at least one dose of COVID-19 vaccine by 30th June 2021, as recorded in their primary care records, was 77% for people with recurrent major depression, 76% for people with bipolar disorder, 75% for other depressive disorders, and 70% for psychotic disorders, compared to 68.4% for people not diagnosed with severe mental illness.

However, when we looked at records of who had refused a COVID-19 vaccine, people diagnosed with schizophrenia were more than twice as likely to refuse vaccination compared to people not diagnosed with severe mental illness (5% versus 2%). While the reasons for this are not clear, explanations could range from a heightened vaccine hesitancy among people with severe mental illness, to reflecting that health care professionals may have more actively offered, discussed and/or recorded attempts to promote vaccination with people with severe mental illness.

The study formed part of a broader programme of work looking at COVID-19 outcomes among people with mental illness. It has already been shown that people with schizophrenia are 5 times more likely to die due to COVID-19. By highlighting differences in vaccination uptake and refusal among people with different diagnoses, this latest paper takes another step towards showing where further work may need to be done to protect people with mental illness from COVID-19.

Click HERE for more information.


Image of nurse doing temperature check on a child

Research Focus

The equitability of the UK COVID-19 vaccination strategy

Principal Investigator

Dr Ruth Watkinson, The University of Manchester

Summary

To use electronic health data from across Greater Manchester to test whether the government vaccination plan meets the goal of giving equal priority to people with equal vulnerability to COVID.

Number of researchers accessing the GM Care Record: 4

STATUS: CompletE

Results of Study

Previous research has found wide inequalities in COVID-19 vaccine uptake between ethnic groups in many countries. In the UK, uptake of COVID-19 vaccination has been particularly low amongst people belonging to Black or Black British ethnic groups. However, previous studies tended to use broad ethnic groupings, and it was unclear how ethnic inequalities in COVID-19 vaccination compared to inequalities in uptake of previous vaccination programmes.

Using the GM Care Record, we estimated inequalities in COVID-19 and seasonal flu vaccine uptake between 17 ethnic groups within Greater Manchester. We found that ethnic inequalities in COVID-19 vaccine uptake are far wider than those seen previously for flu vaccine uptake, and exist even amongst people who recently had a flu vaccine. Of particular concern, ethnic inequalities in COVID-19 vaccine uptake are concentrated amongst the most vulnerable – people living in the most deprived neighbourhoods, and older and extremely clinically vulnerable adults.

Our findings suggest the COVID-19 vaccine rollout has widened pre-existing health inequalities in vaccine uptake. Themes raised in our public and community discussion groups suggest that lower trust in COVID-19 vaccines and practical barriers to vaccine access are both likely to contribute to lower COVID-19 vaccine uptake amongst minority ethnic groups. More research and community engagement is urgently needed to build trust and confidence amongst minority ethnic communities, and to better understand and remove barriers to vaccine access.

Click HERE for more information.


Image of a health care worker using a computer for research

Research Focus

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

Principal Investigator

Dr. Sarah Steeg, The University of Manchester

Summary

To find out if the number of people seeking help following self-harm during Winter 2020, followed a similar
pattern to Spring 2020, 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

STATUS: CompletE

Results of Study

Self-harm is a common reason for people to seek help from health services and it is linked to suicide risk. Looking at trends over time in self-harm is an important part of understanding a population’s mental health. It is also essential in assessing the mental health impacts of COVID-19.

We used data from the GM Care Record to compare monthly numbers of self-harm episodes recorded in primary care. We studied 33,444 episodes of self-harm by 13,148 people recorded between 1 January 2019 and 31 May 2021. We explored findings by age groups, gender, level of social deprivation (a measure of poverty and access to services) and ethnic group. People with experience of self-harm, and carers, were involved in designing the study and making sense of and sharing the findings.

In April 2020 the number of self-harm episodes recorded in Greater Manchester primary care was around a third lower than in February 2020. We also found longer-term reductions, for example, between August 2020 and May 2021, the number of episodes was around a tenth lower than expected. These longer-term falls were largest for
men and people living in the most deprived neighbourhoods. There was also a small increase in self-harm episodes by young people aged 10 to 17 years.

People in Greater Manchester are now more likely to seek help for self-harm than during the first wave of COVID-19 in spring/summer 2020. However by May 2021, the number of people accessing healthcare for self-harm was still lower than before the pandemic. This could be because people aren’t seeking help from health services in the way they did before the pandemic. Some people could be accessing other types of support, while others may not be receiving any support. Access to care may be still be more unequal than before the pandemic, with men and people living in the poorest areas less likely to seek help.

This study is important for understanding the unmet need among patients who have self-harmed. It also helps understand the demand faced by health services. Future work includes looking at the types of treatment received by people who are in contact with primary care services after harming themselves.

Click HERE for more information.


Doctor using a stethoscope

Research Focus

Evaluation of why type 2 diabetes 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

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 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

STATUS: CompletE

Results of Study

Diabetes is a condition that affects around 4 million people in the UK. People with diabetes have high levels of blood glucose and if not managed, can lead to serious damage to the heart, feet, eyes and kidneys. Previous research has shown that people with diabetes are more likely to become seriously unwell, or die, after a COVID-19 infection. The exact reasons for this are still largely unknown.

This research looked at two areas: the risk of being admitted to hospital, and the risk of dying. Firstly, the study compared how likely patients with diabetes and patients without diabetes were of being admitted to hospital or dying after having a positive COVID-19 test. Then, using statistical models, the study investigated why might this risk be higher for diabetes patients: such as weight, BMI and blood pressure.

It was found that that patients with diabetes (type 1 and type 2) were at a much higher risk of being admitted to hospital or dying than other patients. The factors that added to the risk of dying included: age, being male, social deprivation, kidney problems, a history of high blood pressure and having certain medical conditions such as Chronic Obstructive Pulmonary Disease (COPD), but not asthma. It was also found that patients prescribed certain diabetes medications (metformin and gliflozins) had a lower risk of dying. Smoking significantly increased the chance of dying.

The factors that added to the increase in the risk of people with diabetes being admitted to hospital included age, social disadvantage, being of African ethnicity, being overweight, high blood pressure, having COPD and kidney problems. Again, patients on the drug metformin had a lower risk.

The findings of this study will be used in decisions made in the UK to help reduce the risk of people with diabetes of all types becoming seriously ill or dying after having COVID-19.


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