Written evidence submitted by The Association of Medical Research Charities (AMRC) (DTN0068)

 

 

Key messages

 

 

 

 

 

 

 

 

 

About the Association of Medical Research Charities (AMRC)

 

AMRC is the membership organisation for medical and health charities funding research in the UK. We have over 150 member charities that fund all stages of research - from basic science projects to clinical trials - in all areas of health and disease throughout the UK and overseas. Our members have invested nearly £15 billion in research in the UK over the last ten years. Together, AMRC members are the top public funder of medical research in the UK. Charities play a unique role in the life sciences ecosystem; driven by patient priorities and tackling areas of unmet need, they accelerate the delivery of innovative treatments to patients.

 

How can the Government communicate the benefits of digital approaches in healthcare to the public and provide assurances as to the security of their data?


Patient data and digital technologies are crucial in advancing medical research and holds vast potential to deliver benefit to patients. Many of our members are making strides forward in this space; nearly a third hold or support patient data assets - including patient data registries - and almost half of our members are developing digital health technologies.

 

Benefits of using health data for research

The are many benefits of collecting, linking and using data to improve health. Charity-funded researchers rely on information from patient data to understand more about disease risks, to improve diagnosis and to develop new treatments. Notable examples from medical research charities include:

 

Examples like these would not have been possible without the use of patient data in research. Further, the ability to link and use health data alongside other sources of data has also led to huge benefit – for example the impact on asthma in linking health and environmental data to monitor the effect of air pollution on health.

 

Charities support the use of health data for research and innovations and welcome the NHS Data Strategy’s ambition to improve the availability of data and connect it more effectively across different parts of the system, both for individual care and research.

 

However, is vital that the public feel assured that their data is secure and being used responsibly.

 

Public trust and engagement in the use of data

Public trust and engagement must be the bedrock of the effective use of data and digital to transform the NHS. Health data is sensitive, so it is crucial that Government recognises the importance of responsible uses of data that are underpinned by trust and meaningful public engagement.

 

Public trust should not be taken for granted; continuous, clear public engagement and transparency is vital. It is important that Government focuses on meaningful engagement with the public to understand peoples' concerns and communicate the safeguards in place to protect data, before talking about the benefits of using data. Otherwise, there is a risk that public trust will be undermined by presenting the benefits without acknowledging peoples’ concerns.

 

We are encouraged to see the increasing emphasis on engagement and communication as the NHS Data Strategy is being revised following consultation. However, much will depend on how it is implemented. The Government needs to recognise the challenges it faces to rebuild confidence in data use. These must be addressed openly and proactively - transparency is imperative.

 

We recognise that there is a role for all stakeholders across the system, including charities, to make the case for the benefits of using patient data, but there is a need for Government to take the lead in explaining the steps that it will take to ensure that data is used responsibly and transparently.

 


How can the Government effectively foster co-operation between the NHS and the private sector to both develop and implement innovation in healthcare?

 

Commercial partnerships can bring enormous benefits to patients and the NHS, but needs an ongoing and open conversation. There are positive examples where commercial companies have used data in partnership with charities, which could be used to showcase best practice and build public trust. For example, the Cystic Fibrosis Trust registry data is used by pharmaceutical companies to conduct research into the long-term safety of new therapies.

 

People are generally comfortable with data from medical records being used for improving health, care and services, for example for research, provided there is a public benefit.1

 

However, many are uncomfortable with the idea of organisations outside of the NHS – for example commercial companies – accessing their health data, and there are particularly strong concerns about data being passed on for marketing or insurance purposes. 2

 

It is important to be transparent about commercial access to data and to discuss the reasons openly. This could help alleviate some fears that companies are benefitting from NHS data ‘behind closed doors’.

 

An ongoing and open conversation will be essential to understand the public’s expectations of commercial partnerships and to provide information about how the ecosystem works and why commercial access to data is necessary.

 

We are pleased to see the NHSX Centre for Improving Data Collaborations progress the discussions about fair return from data partnerships, and the continued focus on this in the NHS Data Strategy. This work is vital in ensuring that commercial access to NHS data is under fair terms, with an emphasis on benefits that flow back to patients and the public.

 

What other functions could and should be performed on the NHS App?

 

We welcome the NHS App as a crucial part of the NHS’ digital transformation. We encourage Government to ensure that the App encourages people to participate in research.

 

It is important that the NHS App is designed to give people good quality information about what research is and why it might be beneficial to take part, as well as showing what research studies are currently happening across the UK.

 

It is also important to ensure that the NHS App includes an transparent and simple way for people to opt out of their personal data being used for purposes outside of their individual care – for example for medical research and planning NHS services.

 

AMRC were pleased to see the NHS Data Strategy suggest that people should be able to set their preferences for how data is used through the NHS App. Giving balanced, transparent information to encourage people to make an informed decision about how their data is used will be crucial in building public trust.

 

What progress has been made in digitising health and care records for interoperability, such that they can be accessed by professionals across primary, secondary, and social care?


1 https://understandingpatientdata.org.uk/sites/default/files/2018- 10/Public%20attitudes%20study%20summary.pdf

2   https://understandingpatientdata.org.uk/sites/default/files/2020-10/Public%20attitudes%202010-2018.pdf

 


We welcome the progress that is being made to interoperable health and care records across the NHS. AMRC wishes to focus comments on the access to those records and the sharing of patient records.

 

Medical research charities welcome the Government’s commitment to move towards data access through Trusted Research Environments (TREs) and Secure Data Environments (SDEs) to improve the security of access to health data for research and planning purposes. However, more clarity is needed the distinction between SDEs and TREs.

 

Medical research charities are concerned that operational and research uses of data are being treated as distinct, with different ways of accessing data for different purposes.

 

This is problematic because there are many use cases where the lines between operational and research uses of data are blurred and cannot be separated. In the case of the pandemic, NHS data was critical for both research and operational purposes. For example: identifying who to invite for vaccines, monitoring side-effects of vaccines, informing decisions about when boosters might be needed, identifying communities that had low uptake, and assessing health disparities. Another example is data that is used for audit and evaluation. This data is also difficult to categorise, as data relevant for these purposes will be used by those within the NHS, academics and industry researchers. Audit data can be used for assessing the quality and outcomes of care, for care planning and for research purposes.

 

In order to build public confidence, it will be important to have a single governance framework for access to data, with a transparent approach to decisions about access that considers both the purpose of access to data and the user.

 

Furthermore, feedback from our members has highlighted current difficulties in accessing patient records to support clinical decision making, which often leads to duplication of efforts. For instance, it is not routinely possible to access patient neuroimaging records and clinical notes from elsewhere in the country, or across different services such as social care, which would accelerate diagnosis is some fields. Better systems to share patient records would support faster diagnosis and improve care.

 

What progress has been made on making data captured for care available for clinical research through digital transformation?

 

The use of data and digital technologies has substantial potential to improve the efficiency of running clinical trials, including through better recruitment of patients and remote monitoring of patients.

 

We welcome services like NHS DigiTrials which aim to help trialists better utilise NHS Digital data more efficiently. We are also encouraged by new proposals for Find, Recruit and Follow up. People want the opportunity to be involved in clinical trials and the ‘Find, Recruit and Follow up’ process should help bring more opportunities for patients to take part in speeding up developments.

 

However, whilst the Government’s ambition and direction of travel in this area is positive, much will depend on how this vision is delivered and implemented.

 

We encourage the Government to continue to engage with medical research charities as key stakeholders to support on their commitments to harness data in clinical trials.

 

Medical research charities have strong relationships with patient groups and the public. Charity research is shaped by the public’s priorities and our members often have links to

 


patients and the public through work with communities, providing support such as information and advice. For instance, AMRC member-funded research leading to 32,932 unique patient and public engagement activities in 2021.

 

In 2021, 271,000 people in the UK were recruited into over 1,000 clinical studies or trials funded by AMRC members.

 

Many AMRC members also hold patient data in registries which can be used to able to support and drive innovation at different phases of a clinical trial, including through better recruitment of patients. 3

 

Medical research charities can therefore play a key role in helping identify research volunteers for clinical trials - both through data available in charity-led patient data registries, and through signposting patients to take part of research.

 

Specifically, have lessons been learned from the success of the streamlined and accelerated nature of the RECOVERY trial, as pioneered during the pandemic by professor Sir Martin Landray?

The government’s Life Sciences Industrial Strategy outlined an ambition to make the UK the go-to-place for clinical research. The COVID-19 RECOVERY trial has highlighted how greater collaboration between academia, industry and regulators and backing, with backing and support from government, can result in new approaches and faster trial set-up, as well as innovative and remote approaches in existing trials. The research response to COVID-19 has shown that the UK has the key elements of successful trial delivery but needs to ensure that all the components are working together consistently to fully realise the potential.


 

How can the creation or exacerbation of digital inequalities be avoided when implementing digital transformation?

 

The Government must set out how they plan to address digital inequalities. Whilst the use of digital tools has the potential to provide huge benefits to patients, it is important that alternative options are provided to people. The use of digital tools could exclude those who may not be able to, or may find it difficult to use the internet or technology due to technological illiteracy, financial problems, homelessness, or disability. This risks disadvantaging certain groups and widening health inequalities.

 

Furthermore, it is important that NHS data represents the diversity in the country. Data plays a vital role in understanding health inequalities. For instance, it was through NHS data on

 

 


3  https://www.amrc.org.uk/Handlers/Download.ashx?IDMF=e535be59-a25c-4bfa-9ead-52a24648d08f

 


Covid-19 that researchers were able to identify that Black and Asian people were at higher risk of Covid-19.

 

AMRC were pleased to see the NHS Data Strategy recognise the importance of representative data to tackle health inequalities.

 

June 2022