FAQs

FREQUENTLY ASKED QUESTIONS ABOUT INSIGHT

Click on a question to jump to the answer. Click on a heading to jump to that section.

General questions

 

1. Why does INSIGHT need patient data and what will it do with it?

2. How does eye data relate to other health conditions? 

3. Where does the INSIGHT data come from and what kinds of data does it include?
4. Whose data is held by INSIGHT?

5. What safeguards are in place to ensure my data is held securely by INSIGHT? 
6. How can I opt out of giving my data to INSIGHT and can this be done for data already collected?
7. Can I opt out of having my data made available on a case-by-case basis through INSIGHT?

8. If I am not currently a patient at Moorfields Eye Hospital or University Hospitals Birmingham, can I give my data to INSIGHT if I want to contribute to the development of new treatments? Will you also be collecting data from healthy individuals?

The NHS and INSIGHT

 

9. Will INSIGHT be selling NHS/patient data?
10. What commercial model will the NHS be using to make its data available through INSIGHT?
11. How will the NHS benefit from INSIGHT?

12. If treatments etc. are developed from INSIGHT data, who will own them and profit from them, and will the NHS be given free/preferential access?

Research using data from INSIGHT

 

13. Who is likely to be using data from INSIGHT?
14. When will the data become available?
15. What are the ‘five safes’?

16. How can I be sure that the users of the data are ethical and will use it for ethical purposes?

INSIGHT and its partners

 

17. What is Google Health contributing to the partnership?

18. What is the benefit to Google Health?

19. What is Roche contributing to the partnership?

20. What is the benefit to Roche?

21. What is Action Against AMD (AAAMD) contributing to the partnership?

22. Will Google Health and Roche have access to my data? Will they be able to use INSIGHT data for free?

23. Will your partners benefit financially from INSIGHT?

Testing INSIGHT

 

24. How will you test the system?
25. What is a ‘test case’?
26. What does a ‘test case’ test?
27. What are your first 'test cases’?

28. What happens to the data used for the ‘test cases’?

Public and patient involvement and engagement with INSIGHT

 

29. What involvement is there from patients and public in the set up and functioning of the INSIGHT hub?
30. INSIGHT is being proactive in letting patients know what it is doing and why? What does that include? 

31. As an individual patient or member of the public, will I be able to influence INSIGHT decisions on who can access its data and for what purposes? To what extent will patients and the public be consulted on this?

 

General questions

​1. Why does INSIGHT need patient data and what will you do with it?


INSIGHT is focused on eye disease and its connection to wider health issues, including diabetes and dementia. INSIGHT will turn routine eye imaging – currently more than 25 million images a year across the whole of the NHS – into a resource for innovation to improve patient care. 


By allowing access to anonymised patient data stored at Moorfields Eye Hospital and Birmingham Hospitals, INSIGHT will allow advanced scientific analytics, including artificial intelligence (AI), to develop new insights in disease detection, diagnosis, treatments and personalised healthcare (where treatment can be tailored to an individual based on that person’s own health data).

 

2.    How does eye data relate to other health conditions? 

 

There are potentially more aspects of our health and biological status that are encoded within our eyes, we just need to discover them.


We call this approach ‘oculomics’ – the science of using eye imaging to detect changes in the eye that tell us about other types of disease, such as dementia, diabetes or vascular disease.


These kinds of discoveries from routine ophthalmic imaging are increasingly possible because of advances in technology, a combination of computer-based techniques such as machine learning and increasingly powerful computers to make this possible. These ‘artificial intelligence’ type approaches are only possible when you have large datasets for the computer algorithms to learn from. In fact it is the size and quality of data, rather than technology, that is currently the major limitation to medical advances in this area. That’s why INSIGHT can make such a big difference in this area.


This is an exciting and innovative area of eye research which we hope will lead to earlier detection, faster diagnosis and better monitoring of a whole range of serious health conditions.

3.    Where does the INSIGHT data come from and what kinds of data does it include?

 

Existing data has been collected from patients at Moorfields Eye Hospital in London, one of the world’s leading centres for eye care, research and education and University Hospitals Birmingham (UHB), one of the UK’s largest acute NHS Trusts and a leader in digital healthcare. New patient data from Moorfields and UHB will be added to the existing data sets on an ongoing basis. In the future other NHS Trusts may also wish to join the INSIGHT hub so that their routinely collected anonymised data can also be made available for research that improves patient care.


The data is based on individual patient records and includes ophthalmic imaging, visual field tests and other clinical data. 

 

4.    Whose data is held by INSIGHT?


The data comes from all patients (except those who have opted out of sharing data for research purposes) receiving routine care at Moorfields and UHB, including data already held and data collected for research (where consent has been given for future analysis). 


The INSIGHT datasets will continue to be updated over time. This is important so that these data accurately reflect the most modern treatments. Additionally as the size of the datasets increase, so does their power to answer research questions.


The INSIGHT Research Database will be updated quarterly with newly generated data and with the removal of data from patients who have opted out of data-sharing via the NHS opt out scheme. 

5.    What safeguards are in place to ensure my data is held securely by INSIGHT?

In line with HDR UK policy, INSIGHT is committed to promoting the protection of privacy and data security in line with the OECD Recommendation of the Council on Health Data Governance, and to use a proportional approach to the governance of data access based on the ‘five safes’: safe projects, safe people, safe settings, safe data and safe outputs. 

 

INSIGHT benefits from the input of patients and public through our PPIE workstream and the Data TAB who engage with a patient Sounding Board that will engage with all our activity and ensure a focus on the ethical and responsible use of data for the benefit of UK patients and the public.

 

6. How can I opt out of giving my data to INSIGHT and can this be done with regard to data that has already been collected?

 

Patients will be able to opt out of having their data used for research purposes via the NHS national data opt-out. All records held by INSIGHT will be checked against the national database of opt-outs on a quarterly basis, and the data of those individuals who have opted out will be removed. If the data has already been processed at the point at which the patient opts out, the individual’s data will be removed. 


Following opt out, data regarding that individual will be removed from any existing datasets within INSIGHT to which it can be linked. Data will not be removed from fully anonymised datasets since at that point there is no linkage back to the individual. 


It is these anonymised datasets that are made available to researchers, precisely because there is at that point no connection back to the individual.

7. Can I opt out of having my data made available on a case-by-case basis through INSIGHT?

 

Currently the NHS only provides an absolute opt in or opt out. However, we are exploring more nuanced approaches whereby a patient could choose the sort of projects or applicants they were happy to opt in to, and which they wanted to opt out from.
 

8. If I am not currently a patient at Moorfields Eye Hospital or University Hospitals Birmingham, can I give my data to INSIGHT if I want to contribute to the development of new treatments? Will you also be collecting data from healthy individuals?

At the moment you can only contribute data if your care is at either Moorfields or UHB, the founding NHS partners. However the aim is to make INSIGHT available to all NHS Trusts and even other eye care partners such as optometrists, so as to provide the world’s best resource for understanding eye health issues and improving patient care.

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The NHS and INSIGHT:

9.  Will INSIGHT be selling NHS/patient data?

 

Access to data through INSIGHT will only ever be provided after ethical review and will not be available for free – our partners will also need to follow the same process. The amount charged by INSIGHT is yet to be determined but is focused on ensuring that the INSIGHT hub can be a long-term resource and is financially sustainable beyond the initial three years of government funding. In recognition of the real costs of building and running this research service there will be a charge to researchers accessing the data held by INSIGHT, or for services provided using the data, or both. 


The primary value that the data provides to patients and the NHS is to enable research that will improve patients’ lives and improve the way that the NHS delivers care. There is a cost to preparing this data, building this infrastructure and running the research service. To cover these costs and to enable INSIGHT to be sustainable there will be a charge to researchers accessing the data held by INSIGHT, or for services provided using the data, or both. We are keen that this cost is not a barrier to research that would benefit patients, and we will therefore ensure our costing models will take into consideration the type and size of the organisation applying.


If there are profits beyond recovering the costs of running INSIGHT, then they will be used to enable growth of INSIGHT (such as helping other NHS partners join and providing additional services). Any profit from licensing access to data over and above this would be reinvested back into the NHS, specifically the NHS trusts that control the data.

 

10. What commercial model will the NHS be using to make its data available through INSIGHT?

The primary value that the data provides to patients and the NHS is to enable research that will improve patients’ lives and improve the way that the NHS delivers care. There is a cost to preparing this data, building this infrastructure and running the research service. To cover these costs and to enable INSIGHT to be sustainable there will be a charge to researchers accessing the data held by INSIGHT, or for services provided using the data, or both. We are keen that this cost is not a barrier to research that would benefit patients, and we will therefore our costing models will take into consideration the type and size of the organisation applying.


This is something that is being discussed both at the national level and specifically for INSIGHT. Patients and the wider public are a key voice in this debate, and are helping define what is considered to be a ‘fair’ offering for the NHS. Over and above the need for the NHS to cover the costs of collecting, storing and processing data, INSIGHT and the NHS trusts involved need to establish the extent to which they expect the data to provide a new and potentially significant income stream for the NHS, and how this fits in with the overall NHS policy on the commercialisation of patient data. 


11. How will the NHS benefit from INSIGHT?

 

The use of health data by INSIGHT will always put benefit to patients and the public first. By providing an opportunity to harness the expertise needed to unlock the value and benefits of health data, INSIGHT should lead to improvements in health across the UK, which in turn will be of benefit to the NHS through better outcomes for patients, not just in terms of eye health, but potentially across a range of other health conditions such as diabetes and dementia. 


The NHS trusts that provide the data available through INSIGHT will be paid for the use of this data by third parties. The nature of this payment is yet to be determined, but INSIGHT is working with patients, the public and other stakeholders as part of a national conversation with other hubs, other hospitals and organisations, to ensure that the NHS receives a fair share of any benefits that accrue through use of the data. The commercial framework will work both in terms of access to new treatments/diagnostics and eventual financial return that can help support services within the NHS. 


12. If treatments etc. are developed from INSIGHT data, who will own them and profit from them, and will the NHS be given free/preferential access?

 

This is a national conversation in which patients and the public are taking a leading role. A key principle is that the arrangements should provide value back to the NHS and provide benefit to the patients and public which the NHS serves. Any third party accessing data from INSIGHT will enter into a commercial agreement with the owners of the data (i.e. the NHS Trusts, Moorfields and University Hospitals Birmingham). The nature of this agreement could range from a one-off payment to cover costs to full ownership by the NHS of any new intellectual property developed using the data.

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Research using data from INSIGHT

13. Who is likely to be using data from INSIGHT? 

 

Anyone requesting access to data must demonstrate the benefits that their research will bring to patients and the NHS. This could include universities, research organisations and charities, pharmaceutical companies, technology companies and other organisations who can show that they want to use the data to improve outcomes for patients and/or the NHS. In all cases INSIGHT undertakes a due diligence process to ascertain that the applicant organisations are appropriate to be undertaking this research and to be provided with access to the data. Only organisations with recognised research programmes and a clear commitment to research that will benefit patients will be considered; private individuals will not be able to access the data. 


14. When will the data become available?

 

The first datasets are expected to be becoming available in March 2021. Access to datasets will be managed through the national HDR UK Innovation Gateway.


15. What are the ‘five safes’?

 

The ‘five safes’ are a helpful way of thinking about the different ways we keep data safe and use it responsibly. They comprise:

  1. Safe projects - Is this use of the data appropriate?

  2. Safe people - Can the users be trusted to use it in an appropriate manner?

  3. Safe settings - Does the access facility limit unauthorised use?

  4. Safe data - Is there a disclosure risk in the data itself?

  5. Safe outputs - Are the statistical results non-disclosive?

 

Consideration of these five aspects of data safety has been central to the INSIGHT database design and operation, and has been reviewed independently by the Research Ethics Committee. Our Data TAB use this framework to assess requests for data. 


16. How can I be sure that the users of the data are ethical and will use it for ethical purposes?

 

The ethical use of data for patient benefit is the foundation of the INSIGHT programme, and our processes reflect this. Requests for data from INSIGHT will be asked to complete an online application form. INSIGHT will then follow a protocol to decide whether to allow access. This will include information regarding the project (including whether and how it is in the public interest), what data is being requested, and who is making the request and for what purpose. Applicants will be required to prove that they are only requesting the data that they need, and that this data will be held in a safe setting.


Requests for data will only be granted if they can demonstrate that it will be used for the benefit of patients. Risks and unintended harms will be reviewed and applications will need to demonstrate that these have been minimised. Only individuals and organisations that are deemed credible and appropriate will be granted access to INSIGHT data. Applicants will also be expected to show a commitment to sharing their results openly and returning relevant new data to INSIGHT to support future research.

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INSIGHT and its partners

17. What is Google Health contributing to the partnership? 

 

Google Health will be providing Google Cloud Platform credits to support the technical infrastructure and, where appropriate, technical expertise. It is also funding several patient engagement events over the next three years. 
The Google Cloud Platform is approved by the NHS for the storage of patient data, and has industry-leading security with secure back-up systems in place to protect the data. Read more about the INSIGHT partners


18. What is the benefit to Google Health? 

 

Google Health wants to help global health efforts by developing new products and services that connect and bring meaning to health information.  Google Health is just one element of this exciting organisation. 
Google Health is supporting to build an effective infrastructure in the patient data sector. 

 

19. What is Roche contributing to the partnership? 

Roche UK is working with INSIGHT by providing tools and strategies for patient engagement and involvement. Roche is providing expertise and resource across the organisation. Read more about the INSIGHT partners 

20. What is the benefit to Roche?


Roche want to share knowledge and expertise and be a key part of the collaboration to help address the growing unmet need in ophthalmic disease and drive the future of eye health. 
Its pipeline and success in developing new medicines rests on access to high quality data that can be provided in a safe and responsible way. This leads to both new research insights and more personalised clinical care. However, the approach necessitates willing partners, seeking to combine their data and expertise and also in a thriving health data environment. 

 

21. What is Action Against AMD (AAAMD) contributing to the partnership?

 

AAAMD is helping INSIGHT ensure that patients and the public have a central role in the decision-making processes around data within the hub. In particular, AAAMD is leading the Data Trust Advisory Board (DataTAB), which includes patients and members of the public, and whose role is to develop consent models and review requests for access to the data available through INSIGHT. Read more about the INSIGHT partners

22. Will Google Health and Roche have access to my data? Will they be able to use INSIGHT data for free?

 

INSIGHT’s commercial partners will not be given preferential access to the data. In order to access the data, they would need to apply in the same way as any other research organisation and be scrutinised using the same criteria. 
As an INSIGHT partner, Google Health will be providing cloud storage space for INSIGHT data according to standard NHS practices. Neither Google Health nor Roche will have direct access to the data itself. They can make data access requests through the normal INSIGHT channels in the same way as any other research applicant.

23. Will your partners benefit financially from INSIGHT?
 

No. The partners are contributing their expertise, direct funding and services (such as cloud computing storage) that supports the function of INSIGHT. In return, they will develop skills and experience that may be of use to them in future partnerships with the NHS or more widely. They will not have preferential access to patient data or make a profit from the selling of data through INSIGHT. 

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Testing INSIGHT

24. How will you test the system?

 

Whilst we were building the INSIGHT hub, we submitted the hub design and research proposal for review by an independent research ethics committee who have given their approval. As we build the hub we are testing each component including data security, data deidentification, and data application processes. We are then doing complete ‘beginning-to-end’ testing with some trial research applications – which we call ‘test cases’. 


25. What is a ‘test case’?

 

‘Test cases’ are real research questions addressing real problems, but they will be used to check that the INSIGHT processes work efficiently and that all processes comply with what are known as the ‘five safes’ of the responsible and safe use of data. These ‘test cases' are generated by clinical researchers within the INSIGHT Team themselves, rather than external researchers. 


26. What does a ‘test case’ test?

 

It is important that our test-cases mirror as closely as possible the types and sources of data access request which INSIGHT can expect to receive once we ‘go live’. Our data access test cases therefore will: 

  • include a range of potential requests, from other NHS organisations, academic or industry requests, or combined requests from multiple organisations.   

  • be “real”: appropriate and proportionate to answer a real clinical or clinical operational problem and therefore likely to lead to patient benefit.

  • test the information governance process with respect to data access requests, due diligence checks, checks against ethics permissions and the legal basis for data use.

  • test processes and turn-around times for making that data usable for research purposes, including for example, processes for de-identification.

27. What are your first 'test cases’?

 

In response to COVID-19, INSIGHT consulted with the clinical teams at its NHS partner hospitals, and have prioritised the first test case’ as an analysis of the impact of the COVID-19 pandemic on hospital eye services. Specifically we want to see how the care of patients with AMD may have been affected by delay to diagnosis and treatment. This is a real clinical problem, which was proposed by and is being led by the NHS partners on the INSIGHT team. Roche are providing a data analytics service, and because of their capabilities, can ensure high speed analysis and return of results. The data provided for analysis is anonymised data, and subject to data licensing and contractual arrangements. The results of this research will be published and made available to hospital eye services to help them plan their responses to COVID, with a view to optimising eye care, even under other potential major disruptions. Future ‘test cases’ will test other types of data access requests and sources, but will again be focused on real problems that are likely to lead to patient benefit.


28. What happens to the data used for the ‘test cases’?

 

As with future ‘real life’ applications to INSIGHT, data is processed and anonymised within the NHS Trusts (the ‘data controllers’). Once anonymised, this data is made available to researchers from the INSIGHT team. For the COVID test case this includes experts in data analysis from Roche, one of the INSIGHT partners, who have expertise in this area. Only anonymised data will be available to these researchers. The researchers will work together to build data models that will be provided back to the NHS partners. These models will be published openly to help guide NHS hospitals in planning their response to further waves of COVID or other major disruptions.

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Public and patient involvement and engagement with INSIGHT:

29. What involvement is there from patients and public in the set up and functioning of the INSIGHT hub?

 

Public and patient involvement and participation (PPIE) is core to the values of INSIGHT, along with all the other HDR UK hubs. Patient representatives are involved in all of our key work-streams, and our aim is to make this involvement as representative, fair and transparent as possible. The Data Trust Advisory Board, which will review requests to access INSIGHT data, includes patients and members of the public. PPIE groups associated with INSIGHT work with those from other HDR UK hubs as part of a national network to share learning, and to ensure that the values and interests of patients and the wider public are kept central in the work of the hubs. 


30. INSIGHT is being proactive in letting patients know what it is doing and why? What does that include? 

 

Privacy notices by the NHS Trusts which provide information through their websites:

As well as the information on the INSIGHT website, you can also find out more about INSIGHT (and the other health research data hubs) on the Health Data Research UK website.

 

The content and descriptions are reviewed regularly by patient and public groups to check that they are adequate and transparent. An introductory video about INSIGHT is also available on the HDR UK YouTube channel.

 

Our FAQs continue to be reviewed and supplemented with our patient and public groups in response to enquiries.

Lay summaries, blogs and updates: INSIGHT actively promotes its purpose and operations through articles in any available media format, including regular blogs and articles in the scientific press and mainstream media. 


31. As an individual patient or member of the public, will I be able to influence INSIGHT decisions on who can access its data and for what purposes? To what extent will patients and the public be consulted on this? 

It is a founding principle of INSIGHT that patients and members of the public have a fundamental role in guiding decisions regarding who gets access to data and for what purposes. Patients and public have been consulted through the national strategy for the Health Data Research UK hub programme and specifically patients with sight-threatening disease have been consulted throughout the design of INSIGHT. This has led to the establishment of a Data Trust Advisory Board (Data TAB) which includes patient and public representatives to provide guidance to the NHS Trusts on the principles of data access and specific advice regarding individual research applications.

 

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