Data accessibility

Statistic producers should commit to innovate and improve statistical collections where there is unmet user need

Many users told us that there is a wealth of activity data collected by the HSC trusts, yet this information is not available to the public. Users were frustrated by the lack of routinely published mental health data in Northern Ireland. It prevents them from answering the questions that they have. Concerns around data quality and the fragmented IT infrastructure are likely to be contributing factors in the limited publication of mental health data. However this is not publicly documented or acknowledged anywhere. As highlighted in this report, official statistics on mental health in Northern Ireland are limited. As a result, users are turning to different routes in order to access mental health data, for example using Freedom of Information (FoI) requests to the Health and Social Care Board and to the HSC trusts. We heard that access to data via these routes was challenging, with significant time delays, inconsistency in what data was provided and a lack of technical guidance around data quality. The data provided from the trusts under FoI often utilise a particular coding method and acronyms making it difficult to understand and use.

The Health and Social Care Board (HSCB) collect statutory health care information from each of the trusts in their role to commission health and social care services in Northern Ireland. Much of this data is unpublished however, and many users we spoke to request information, such as detailed funding data, directly from the Health and Social Care Board in order to gain access. When seeking information on mental health services, the HSCB was cited as a key contact and data supplier by users.

The Department for Health (NI), in liaison with the Health and Social Care Board (HSCB), should periodically review Freedom of Information and other data requests and consider whether to include the information in future routine data publications.

Obtaining secondary data for analysis is challenging, particularly unlocking potential insight from linked datasets across Government

Researchers and data scientists are keen to explore and make more use of mental health data in Northern Ireland. As cited within this report, there is a wealth of mental health research being undertaken by the research and academic community. As an example, the Bamford Centre for Mental Health and Wellbeing at Ulster University was established in 2011 with the aim of increasing understanding of mental health through research conducted in Northern Ireland. Their work offers valuable insight and evidence to inform and influence policy and practice. Whilst official statistics are useful for informing literature reviews and scoping exercises, researchers we spoke to wanted to access and link datasets themselves to explore and develop insightful conclusions.

Researchers use the Open Data NI portal to access data collected by the public sector in Northern Ireland. During our interviews, those we spoke to from an academic/research background valued the portal and it was viewed as a well-stocked repository of open healthcare data, particularly when compared to the rest of the UK.

We heard however that access to health administrative data for secondary analysis is challenging in Northern Ireland. Secondary use of health care data relates to information collected in the course of providing health and social care but being used for other purposes other than direct patient care i.e. research and development purposes. We heard of two main barriers in the research community which were impacting the pace of research and limiting their potential use.

In Northern Ireland, the majority of health data is warehoused centrally in the Business Services Organisation (BSO) and accessed for research purposes via the Honest Broker Service. The platform enables authorised access to anonymised, aggregated and in some cases pseudonymised health and social care data within a safe setting where researchers attend physically to access the data. COVID-19 restrictions in place over the last year has resulted in the closure of the safe settings. This has led to huge delays in analysis, with all mental health research via this route stalled. In contrast, data can be accessed remotely elsewhere in the UK, for example in Wales via the SAIL Databank. We are pleased to see that since we spoke to the researchers who raised this issue to us, progress has been made with the launch of a new data access initiative ‘Data and Connectivity’ led by Health Data Research UK (HDR UK) in partnership with the Office for National Statistics (ONS). With investment, a UK Secure eResearch Platform (UK SeRP) will enable researchers to access data held by the Honest Brokers Service remotely.

The second barrier we heard of in accessing data for secondary analysis relates to data linkage. Meaningful and important insights are often uncovered when single sources of data are linked together.  We heard that there is currently no legal gateway in Northern Ireland for researchers to link ‘health’ data to other departmental datasets. Data sharing is less common between separate Government departments and is a barrier to researchers trying to answer research questions around socio-economic and socio-demographic factors to contextualise and understand health issues. Ideally, researchers would like to see large linked datasets across Government departments to explore and address lots of society’s questions. To understand the causes of poor mental health across the population, identify at risk/vulnerable groups and to inform preventative initiatives, it is crucial that this barrier is overcome. A key part of the jigsaw is currently missing. The ADRC-NI are in conversation with key stakeholders to circumvent these obstacles, but so far, progress has been slow.

Users should be able to navigate and find statistics, data and related guidance easily

Users can access official health and social care statistics via the NISRA statistics webpage, or via the Department of Health (NI) webpage, under DoH statistics and research. Both routes direct users to the Department of Health (NI) statistics and research webpage. The page is divided into separate categories split by topic and information type, yet relevant statistics for a specific subject may be contained within different categories.For example, there is a category for ‘Mental health, learning disability and autism statistics’. Within this category, users can access annual ‘Hospital Statistics: Annual Mental Health and Learning Disability Tables’, both current and previous publications. The differing titles used to the describe the same publication is confusing as a user and should be aligned.

Separate to the ‘Mental health, learning disability and autism statistics’ category, users can access further information on mental health inpatient and outpatient hospital activity under the ‘Hospital statistics’ category. Furthermore, under the ‘DoH commissioned surveys’ category, as part of the ‘Health Survey Northern Ireland’, users can find results for the draft Programme for Government; indicator 6 General Health Questionnaire (GHQ) 12. QOF (Quality and Outcomes Framework) disease register data is also available under the separate ‘Family health services statistics’ category under ‘GP activity, funding and prescribing statistics’.

There is limited signposting between the different sources and no joined up narrative around how the publications relate to one another. Users have difficulties in finding relevant information on the Department of Health website. When asked the question, ‘how do you access data?’ One user we spoke to replied ‘via the NISRA website with purpose’, i.e. they needed to know exactly where to look. Due to the disjointed nature of access to official statistics via the webpages, users were not confident that they had complete results. For users, it is a challenge to navigate and find relevant mental health statistics and data in a dispersed landscape.

Users also access health and social care statistics via the Northern Ireland Neighbourhood Information Service (NINIS). This is a data portal hosted by NISRA and provides statistical information relating to smaller geographic areas across Northern Ireland as well as NI as a whole. Some mental health statistics are available on here, however lots of the data appears out of date, with more recent versions available via the Department of Health (NI) statistics and research webpage.

The Information Analysis Directorate (IAD) in the Department of Health (NI), in collaboration with users of mental health statistics, should review, innovate and improve accessibility to mental health data. Relevant signposting and navigation between different sources of information should be clear, joined-up and easy to understand.

Statistics and data should be equally available to all and published at a sufficient level of detail that is practicable for meeting user needs.

Current official statistics on mental health published by the Department of Health (NI) are generally published in PDF and excel formats. Users expressed to us that they want to view and interrogate mental health data themselves, in a more timely way via a dashboard, similar to the daily COVID-19 dashboard published by the Department of Health (NI). One user really liked an online portal of mapping data hosted by the Children and Young People’s Strategic Partnership (CYPSP) as a way to find and interrogate relevant data sources. We accept that given the limited availability of mental health data, the development of a dashboard at present may be less valuable. We hope to see that as mental health data is improved, this is considered and actioned.

More widely, we heard that a single central data hub or portal to find all relevant mental health information in Northern Ireland would significantly benefit users. This would not only be for official statistics produced by the Department of Health (NI), but also other relevant and valuable sources of data published by public bodies. For example, the Public Health Agency publish the Northern Ireland Registry of Self-Harm; information around people who present to Emergency Departments with self-harm injuries or have ideas of self-harm or suicide. Users referred to this as a trusted and valuable source of data used to inform policies around self-harm and suicide prevention in NI.

A landscape review of what statistics and data are available across NI would be required in the first instance. Having all relevant sources of mental health information in one place would build confidence across the user community ensuring they captured all available data and would make access simpler.

As part of their longer-term plans to improve mental health statistics, the Information Analysis Directorate (IAD) in the Department of Health (NI) should harness technological advancements to disseminate information to a wide range of users, considering accessibility needs. For example, they should consider developing an online dashboard and a single central data hub for mental health information in Northern Ireland.