In celebration of Clinical Trials Day, some of the DigiTrials team took over NHS Digital’s Twitter page to answer your questions.
NHS Digital is increasing its support for health and life sciences research by developing a service called NHS DigiTrials. The service will help clinical trials progress more easily at every stage, using the data that NHS Digital already collects from health and care organisations across England.
The twitter takeover shone a light on the work they do and gave patients an insight into how they can get involved.
The panel of interviewees consisted of:
- Heather Pinches, Head of Clinical Trials, NHS Digital. Heather has lead NHS DigiTrials since its inception in 2019, with a focus on user centred design alongside public and patient involvement.
- Andy Rees, Clinical Trials Head of Business Operations, NHS DigiTrials. Andy joined NHS DigiTrials in June 2020 to lead the operational delivery of its fledgling services. His focus is on forming partnerships with trialists to maximise the benefits of using routinely collected datasets.
- Ly-Mee Yu, Clinical Fellow for NHS DigiTrials. Ly-Mee is the Deputy Director Academic and Lead Trial Statistician at the Oxford Primary Care Clinical Trials Unit, and she is currently our Secondee at NHS DigiTrials. She has been working on clinical trials in many disease areas for nearly 25 years.
- Dr Ameet, a Research Director, Cardiologist and co-chair of the NHS Digitrials Customer User Group. He has enabled the innovation of drugs, devices and diagnostics, publishing over 100 papers.
Here is a snapshot of some of the questions and answers:
How do you select the participants for trials?
Ly-Mee: Great question! First, we identify which patient group that the trial is aimed at in order to answer the research question. In all clinical trials, there is a set of criteria that potential participants need to meet before inviting them to take part.
In the example of the recovery trial, patients who admitted to hospital and met the eligibility criteria were invited to take part.
Andy: NHS DigiTrials Recruitment service is designed to support trials in recruiting eligible participants based on the criteria they have set out in their protocol. There is a strict governance process that NHS DigiTrials must follow with independent oversight.
We use the data we hold to identify suitable people and then send them an invitation to participate in the trial. The data used will include name, date of birth, address, NHS number and specific data related to the trials criteria.
No personal data is shared with the trial directly and each person who receive an invitation has a choice whether to participate or not.
Heather: The key benefits of the NHS DigiTrials recruitment service as described above is to widen opportunities for people to participate in clinical research.
To enable new ways of running trials eg virtual trails where an individual doesn't have to necessarily visit a trials site and to improve the diversity of trial participants.
I'm really interested in the work you do, and I want to know how DigiTrials became your career?
Ly-Mee: I have been working in Clinical Trials for many years. I am currently working as a secondment at DigiTrials because I am interested to know more about how the service in DigiTrials could help us to deliver trials more efficiently.
Andy: What attracted me to the advert was that I would be joining a team that was looking to build a set of new services around the needs of clinical trialists. It was an opportunity to be part of creating a service that could deliver real benefits.
Heather: My background is quite varied but I've been working in Data Services in NHS Digital since 2015 and what gets me out of bed is the impact, we can make on patient care.
Working with the Recovery Trial during the pandemic was a privilege - knowing we were making a small contribution to finding treatments for people with covid in hospital.
Even small changes like getting an update of a data set to the team at Oxford a few days quicker meant that seriously ill patients were able to be given an effective treatment sooner.
What motivates people to take part in clinical trials and how do they get involved?
Ly-Mee: In 2020/2021 across England, 1.3 million participants took part in clinical research. This website will help those who would like to get involved.
Ameet: People understand that others before them have validated medications to be shown to be effective and that the therapies of tomorrow can only be proven by the generosity and altruism of patients today.
Patients wants others in the future to do better than them so human good will is a strong motivator for research in large diseases large cancer, stroke, heart attacks, asthma and diabetes and also rare disease areas. These are larger phase 3 studies.
Heather: Everyone has their own story and motivation but at the moment not everyone is given the opportunity and we want to open up new ways to approach people to empower then to make the decision themselves.
Some of our patient panel have been kind enough to share their stories and working with them is so important to make sure we get our services right - being transparent and trusted is key.
Andy: There is a lot of interest from people to be able to join clinical trials. During the pandemic over 500k people signed up to be contacted about participating in vaccines trials. That allowed us to support twenty vaccine trials with their recruitment.
What is next for NHS DigiTrials?
Heather: We are part of a wider programme of work Data for R&D with our Communications service launching shortly, followed by our Feasibility dashboard currently in beta testing and launch of the recruitment service once we finish pilot testing later in the year.
Andy: I'm looking forward to us rolling out our Communications service over the next few months. This help take some of the burden of keeping in contact with participants off trialist and front-line services, allowing them to concentrate on the research and taking care of patients.
I'm excited to see trialist test our Feasibility dashboard to see how it can help them better plan trials. We'll be on hand to support testing and can offer a supported service if they need a more detailed set of results.
To keep up to date with future Q&As and to see the full takeover, follow us on Twitter.