‘If we make small changes in the way we deliver medicine we could potentially have a huge impact on the population’

Lydia Drumright is a university lecturer in clinical informatics in the department of medicine. She tells us why patient IT systems are really important in research and why more people should be engaged in research.

Lydia, tell us about your role...

I have a varied job compared to most researchers, but that is something I very much enjoy. I try to understand diseases, their progression in people and develop interventions to better support health needs. Working in clinical informatics, we develop new tools and techniques in IT so we can capture medical data from people to better understand their health problems.

We also look at the current tools we already have in the NHS to see how we can improve them. For instance, my team is looking at how many laboratory tests we carry out on patients to see how many unnecessary repeats there were before and after the implementation of eHospital. We expect to see a reduction because doctors and nurses can now see if a test was ordered and where it is in terms of processing. This could improve our systems and also reduce costs. It may seem unimportant but we want to make the hospital more efficient, and we do not want to put patients through unnecessary testing. We also want reduce the turnaround time for doctors to get results, as these are likely to be part of diagnosis and earlier diagnosis results in better outcomes. We can do simple things by understanding how our systems work.

What is clinical informatics?
Clinical Informatics is understanding data, information technology, and communication with respect to human health. Research is increasingly dependent on the ability to process different types of big data and information systems and computational technologies are needed to do this. 

What happens day–to-day?
I run a large research group, this is split between clinical informatics and infectious disease epidemiology. I am an infectious epidemiologist by training and I do a lot of infectious disease work in gastro-intestinal illness at the moment. I run a very small lab over in the department of medicine looking at transmission and prevention of gastrointestinal illnesses such as norovirus. In clinical informatics we are working on a wide range of activities including, IT interventions, an in-depth understanding of adoption of electronic health records, and numerous studies of healthcare processes.

I do a lot of patient and public involvement (PPI) as well to try and get more people engaged with research. I spend a lot of time writing grants and papers, and collaborating with others from the University of Cambridge and Cambridge University Hospitals (CUH). I am chair of the Central Cambridge research ethics committee and sit on the university research ethics committee. I also sit on the Cambridge infectious diseases strategic research initiative board, which is an initiative to bring people from different disciplines working on infectious diseases together. I do a lot of work trying to support research within the university, it’s a little busy.

Why were you interested in this area of research?
When I was undergraduate I wanted to work in an area that effected human health. Originally I was interested in human genetics, but quite quickly I had a keen interest in infection. I spent my career trying to figure out how I could help the population rather than one person at a time. If we can make small changes in the way we deliver medicine we could potentially have a huge impact on the population. To me that’s really important, there’s not a lot of money to go around and there are a lot of health problems both in infection and chronic disease. There are a lot of ways to prevent human disease and to provide support where it is needed.

The population is not getting any smaller or any younger and we need to do more with the money that we have. I don’t want to see inequality in health care based on financial constraints, everyone should have the right to access health care.

Why is your role in research so important?
Healthcare is expensive and that’s not going to change. Technology is always improving, we can use that to help researchers with their data and improve our current care systems. I’ve spent most of my career working in infectious diseases, and we’re dealing with a lot of infections. I’m very hopeful that people can have good access to healthcare in an efficient way. We encourage people to actively take part so we can make sure everyone is engaged with healthcare.

How long does your research take until patients can feel the benefits?
Looking for a new treatment for people can take years. However, our work can be translated more quickly. In a couple of years we could change how care is carried out in the hospital, for example by providing decision support or understanding the efficacy of certain procedures or treatment regimes. Similarly, with my infectious diseases work, if we understand factors related to transmission of infections we can enact policy to prevent some types of transmission, such as norovirus in a hospital.

How do you get people interested in research?
We have recently been running free workshops called ‘Consent for Contact’. We are trying to create a registry of all patients who come to CUH and would be interested in being contacted by researchers. We’re letting the public shape how they would like to be approached by researchers in the hospital.

We went to Hills Road Sixth Form College in Cambridge to find out how we could engage with young adults. We ran an interactive workshop, teaching the students how to interview their peers and families about research. They are developing the interviews and designing how they will collect the data as well as designing the consent form. We’re really quite excited about trying new ways to engage young people in research. We hopefully will do this at another college in the future. 

Why should people take part in research?
I think it’s important to be involved in the area you’re interested in, it’s a personal choice and it’s different for everyone. A lot of people join because they want to improve treatments for the population and volunteers help us understand what we don’t know. It’s a very selfless thing to do. People should participate because we are one population and there is no way we can develop new drugs or understand problems if people don’t support that. But it is a personal choice and we always respect people’s choices.

I have found people are very supportive of my research and are interested being involved as much as possible. My research involves looking at people’s data and I find people are happy to take part in ‘light touch’ studies. This is where people who have already had a test taken for a clinical appointment and give us consent to let us look at it and their medical records. As they have already provided these samples they are happy to let us use it. Sometimes people feel that they’re not contributing much being part of this, but it gives us a wealth of information to help us move forward with new processes. 

How can people make sure their data is secure?
People should always ask about confidentiality, we follow all legal governance with the Trust and University. All data is anonymous unless we have your consent to look at it in a fully identifiable way. The data is combined when we publish our findings we never publish personal data. We never ever sell data. We’re interested in advancing the health care system for the best care for all and to make sure it is utilised in the most efficient way.  

Does a research study mean you’re taking a new drug?
No, a lot of studies are simply observational and asking for additional sampling and usually no more. We have studies from just watching what you do, asking questions - to at looking how you undertake a series of exercises. All of these studies, whether it’s asking questions or taking bloods have all been through a strict research ethics committee.

The ethics committees are impartial, they’re not part of that study and look at what is safe and appropriate for the people who may join that study. In terms of joining a drug trial you are told about the risks and the trials are conducted in a way where harm is minimised.

In the UK these studies tend to be fairly safe. There are a huge range of studies that happen and certainly no one should be afraid of general research. Everyone should make a decision that is appropriate for them personally and not feel pressured they need to join a study for anyone else.

Can you only take part in a study if you have that particular condition?
No, healthy volunteers can also take part if the researcher needs healthy volunteers. Often healthy people want to take part and that’s why we’re doing the consent for contact workshop. We’re not just interested in people who have particular problems, but those who are healthy and want to volunteer as well. There are lots of studies that need healthy people.

Research is for everyone, I’d love to try and find more ways to engage people. Knowing what research is about, understanding and giving people opportunities to participate. Researchers aren’t scary they’re normal people and are very approachable.

If people want to get involved in research, who should they contact?
Our website has our details so that someone can contact. If you have a particular condition or people who don’t to need see a health practitioner regularly but have an ongoing health issue, there are large organisations and charities in the UK who will know what research is going on. If you‘re under care here in Cambridge, talk to your doctor. If they’re not directly engaged in research they will know who to put you in contact with. You can also contact the research and development department at the hospital.

What would be your dream job?
I love my job, so it would be this one. More funding would be nice. 

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