NHS Digital Data Release Register - reformatted

Meditrends Ltd

Project 1 — DARS-NIC-14340-R7G1F

Opt outs honoured: N

Sensitive: Non Sensitive

When: 2016/04 (or before) — 2018/05.

Repeats: Ongoing

Legal basis: Health and Social Care Act 2012

Categories: Anonymised - ICO code compliant

Datasets:

  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Critical Care
  • Hospital Episode Statistics Outpatients

Benefits:

Expected measurable benefits to health and/or social care including target date: Purpose 1): Meditrends Online Meditrends Online will allows users to: • Identify where local health and social care organisations should focus their planning • Understand the efficiency of existing clinical pathways and services • Model more efficient, integrated (between health and social care) pathways and services by understanding patient cohort journeys and the progression of poorly managed disease • Monitor the success of newly implemented pathways and services. The timelines for Meditrends Online are: • Meditrends Limited has already developed the database and website front end for Meditrends Online to an advanced stage, but have not been able to launch to date because of ongoing uncertainty around the supply of HES data • Meditrends Limited plans to launch Meditrends Online in June 2016 • Meditrends Limited expects to have enrolled in the order of 100 unique users of Meditrends Online in total from around 20 NHS Organisations within 9 Months of its launch. When an application to renew this data access request is made, Meditrends Limited will report on the number of NHS organisations using Meditrends Online, the number of unique users and the types of information most commonly accessed by them. Purpose 2): Custom Analysis Custom analyses are ad hoc in their nature and depend on which health & social care led topics Meditrends Limited is asked to respond to. Examples of previous custom analysis projects and their benefits have been given in Section 5.1 above. An example of a custom analysis that Meditrends Limited anticipates undertaking if this application is approved is for a new medical device that will be introduced to treat heart valve defects in currently inoperable patients. Cardiology is the subject of direct commissioning by NHS England under programme A.09 (Complex Invasive Cardiology). As part of the process of evaluation for inclusion as a commissioned service, the client, will be required to provide to NHS England, evidence of the burden of the disease treated (in terms of hospital resource usage and cost), the size of the potential patient population and a segmentation of the potential population in terms of disease severity and risk to enable NHS England to determine the appropriate use of the technology. Meditrends Limited will use HES data provided under this application to help develop the evidence that NHS England will require. If this device is commissioned by NHS England providers and patients will benefit from having a new therapy option where none currently exists and the burden of medically managing these patients on the NHS will be ameliorated. The contracts between Meditrends Limited and 3rd parties for all custom analyses will document the anticipated benefit to health and social care and the communications and publication plan for delivering these benefits. Under the Objectives for Processing section above a number of projects were listed in 13 different clinical areas. These projects were carried out under Meditrends’ latest data-sharing agreement or earlier versions. Under these agreements there was no requirement to provide evidence of resulting specific benefits to Health and Social care. It was the nature of these projects that clients would commission Meditrends to carry out analyses with the aims and objectives described under Objectives for Processing. Other than general feedback about the way the information was received, it would not have been part of the project engagement to monitor the ongoing use of the analyses with NHS organisations. In the current application, Meditrends has committed to ensure that every project includes a publication plan, and clearly states the anticipated measurable benefits to health and social care. It is believed that their clients understand that the climate around HES data has changed, and they will be prepared to make the additional investment that this will entail. In future, therefore, Meditrends are confident that they will be able to provide the explicit evidence of benefits to support their ongoing access to pseudonymised HES data.

Outputs:

Specific outputs expected including target date: Purpose 1): Meditrends Online Meditrends Online is a website that gives users access to a wide range of HES derived healthcare analytics though an intuitive user interface. These analytics will include hospital activity, disease epidemiology and health economic metrics, summarised at various geographical levels. The site is at an advanced stage of development at present and will be made available to the groups of users as defined in ‘Objectives for Processing’. The site will be live within three months of Meditrends receiving HES data. Purpose 2): Custom Analysis Custom analyses are produced as requested by 3rd parties. Outputs take the form of: • Interactive spreadsheet applications • Documents in Word or pdf format • PowerPoint presentations

Processing:

Processing Activities: General Processing Activities: The general HES data processing cycle can be summarised as follows: HES Data Downloads and Storage: HES data is downloaded from the HSCIC via SEFT and transferred to a secure, fully encrypted, stand-alone server with no connection to the local network or internet. The HES data is imported to a relational database on this same machine for indexing and data cleaning. Access to this machine is restricted to Meditrends Limited staff who have undergone specific, documented and audited training in data governance. Data Processing: Processing of HES data for the production of aggregated outputs for Meditrends Online and custom analyses are only carried out on the stand-alone server. Aggregated outputs are then transferred to an encrypted, secure network for final processing and uploading for Meditrends Online. Meditrends match organisation level (aggregated) data from HES to publicly available GP Prescribing, Quality Outcomes Framework (QOF) and Organisation Data Service (ODS) data, but only to meet the objectives listed and not for the purposes of re-identifying any individual. For clarity, no record level data is supplied by Meditrends Limited to third parties. Data Release: All outputs are published at an aggregated level using HES data in line with the required guidelines and policy documentation. All outputs are subject to a two stage sign off process, involving a manual check of all tabulations. Specific Data Release Requirements Purpose 1): Meditrends Online The Meditrends website contains only aggregate HES data tables and is not hosted on the same network or otherwise connected to the episode level data. Before aggregated data is uploaded to the Meditrends Online website it is subject to a two stage offline and test environment sign-off process to confirm that small numbers have been suppressed as described above. Only the final aggregated database links to user interfaces, meaning record level data is inaccessible via any user interface. Access to Meditrends Online is via a secure password controlled web site. The access cycle for Meditrends Online is: • Each user organisation agrees a legal contract with Meditrends Limited stipulating terms and conditions (T&Cs). This contract contains but is not limited to: o Purpose of data access – as defined in this Purpose Statement between Meditrends Limited and the HSCIC o Restrictions on use of data outputs o Nomination of individual users within an organisation listing user names and job functions o Requirement to publish and reference (where possible) any work which uses the outputs of the HES within Meditrends Online o Confirmation that failure to apply with the above will result in Meditrends Limited removing the organisation from the approved user list and requiring the deletion of all data accessed through Meditrends Online • When the contract has been completed, Meditrends Limited provides HES Protocol training to all nominated users from an organisation, with an online assessment that demonstrates that users understand the regulations plus T&Cs relating to use of HES data outputs. • Individual Users provided with secure login details (username and password) that they must authenticate to access. • Users use Meditrends Online for the purposes defined in the T&Cs. • User login details to be active for restricted time before expiry and the reissue of new details. • Meditrends Limited is responsible for monitoring system usage, enforcing password rotation, and deleting inactive users. Purpose 2): Custom Analysis The outputs of Custom analyses are typically presentations, documents or tabulated data. In accordance with HES guidelines, these outputs only contain aggregated, small number suppressed data (as described above) and are subject to a documented internal sign-off process to confirm that this has been carried out. The access cycle for Custom Analyses is: 1. Contract signed with the 3rd party including: • What the analysis can and cannot be used for • The intended benefit to health & social care; and • The communication and publication plan for the analysis 2 Meditrends Limited undertake the analysis 2. Analysis outputs peer reviewed and quality assured, including checks for small number suppression by Meditrends Limited 3. Analysis released to 3rd party 4. Post release Meditrends Limited follow up adherence to communication and publication plan for analysis Purpose 1): Meditrends online Meditrends online is a complex reporting tool, delivering a broad range of metrics, which are based on pseudonymised episode level data. As an example, an important metric the site reports is a count of unique patient numbers as well as episode and spell counts, aggregated at various hierarchies (by geography, diagnosis and procedure). As patients can have multiple admissions covering several different points within the same hierarchy, when aggregating to higher levels, patient counts are not simply additive and therefore episode level data is needed with a pseudonymised patient identifier linked to each episode. Derived values in HES frequently become obsolete. For example: • Organisational structures change with re-organisations and trust mergers • HRGs definitions (based on underlying diagnostic and procedural codes) are changed annually Access to record level data allows HES data to be converted to present day NHS organisational structures and HRGs and maintains its usefulness. Many conditions are chronic or slow to progress and the ability to study cohorts over 10 to 15 years after the first diagnosis gives valuable insights to health and social care, for example in identifying areas of success or those where there is an opportunity for improvement. Purpose 2): Custom Analysis The requirements for custom analyses are varied, but typically involve the following elements, all of which require episode level, pseudonymised data: • Unique patient counts • Aggregation of episodes into spells to enable accurate assessment of clinical burden and cost • Tracking patient cohorts over time • Epidemiological analysis of incidence, prevalence and co-morbidities Requirement for historic data Tracking patient cohorts requires data covering an extended time period, because studies are often trying to find precursors or predictors of particular conditions. For example in an MS cohort analysis described above, data was required covering a minimum 10 year period in order to allow a statistically significant cohort of patients with four years pre and post treatment history to be studied. Many conditions are chronic or slow to progress and the ability to study cohorts over 10 to 15 years after the first diagnosis gives valuable insights to health and social care, for example in identifying areas of success or those where there is an opportunity for improvement. Projects frequently involve analysing subgroups of patients who have specific events in their history (e.g. previous myocardial infarction, implantation of a pacemaker). These events may have occurred a long time ago, so having access to as much historical data as possible improves the quality of the analyses. Epidemiological models produced by Meditrends often use the first admission with a particular diagnosis (e.g. multiple sclerosis) to estimate disease incidence. Having access to an extended dataset gives a more accurate view of long term trends which helps in producing forecasts of burden of disease. When looking at the impact of particular interventions or alternative treatment pathways there is often a need to follow a cohort for five years before and after a particular event (e.g. heart valve replacement). Limiting the dataset to, say, ten years would reduce both the size of the available cohort and the power of the analysis to achieve statistically significant results. It would also reduce the potential to look at trends over time. Only the minimum amount of filtered data will be used to conduct the required analysis at any one time.

Objectives:

Objective for Processing: Meditrends Limited will use the data solely for the following purposes (any other purposes will be subject to a further application):- Purpose 1): Meditrends Online Meditrends Online is a web delivered system that uses aggregated, supressed, non-sensitive, non-identifiable HES data to assist NHS commissioners throughout the commissioning cycle. Meditrends Online will allow users to: • Identify where local health and social care organisations should focus their planning • Understand the efficiency of existing clinical pathways and services • Model more efficient, integrated (between health and social care) pathways and services by understanding patient cohort journeys and the progression of poorly managed disease • Monitor the success of newly implemented pathways and services. The proposed users of Meditrends Online in the early and developmental stage are: 1. Public Sector Organisations responsible for the planning, evaluation, commissioning or provision of health and social care including: a. NHS-GPs, Commissioners, Acute Trusts, Area & Regional Teams, Strategic Clinical networks; b. Government & government aligned groups: DH, NHS England, NICE and Academic Health Science Networks (AHSN); c. NHS England Commissioning Support Units (CSUs) 2. Patient support groups & other health related charitable organisations; 3. Life Science Companies (pharmaceutical, medical technology, and medical biotechnology); All Life Science Companies are required to be members of the Association of British Pharmaceutical Companies (ABPI); the UK BioIndustry Association or the Association of British Healthcare Industries (ABHI) Although the potential users of Meditrends Online are all of the above groups, the data can only be used for the purposes listed above, with the ultimate beneficiary in all cases being the NHS and Social Care. All users will give a written undertaking to this effect. Meditrends Online outputs will be used by the ultimate beneficiary to optimise the Commissioning Cycle in the following ways: • To assess performance against similar comparisons and to understand where change could be required to achieve Quality Innovation Productivity and Prevention (QIPP) planning. • To communicate with all stakeholders in explaining the rationale for change and to create engagement with users to understand their needs in the commissioning process. • To identify areas of best practice in disease management. To use this data to define, monitor and communicate critical indicators of success. • To forecast future levels of demand for services and configure local resources to need these needs Life Science Companies are a user of the aggregated outputs exclusively for the purpose of using Meditrends Online to benefit the health and social care organisations in England. Life Science Companies users will be highly restricted in their use of Meditrends Online to ensure aggregated HES data are not used for commercial purpose such as targeting sales resource. These restrictions are to be underpinned through a binding legal contract which contains terms which require: • The system to be used exclusively for the purpose of provision of outputs to assist health and social care organisations or patient support groups & other health related charitable organisations in England • The system not to be used for solely commercial purposes • The same aggregated HES data outputs to be made available, if requested, to all health and social care organisations or patient support groups & other health related charitable organisations in England, irrespective of their value to the company • The system only to be provided to a restricted number of named users, who have undergone and passed HES Protocol training underlining the need for non-commercial reuse All named users to authenticate sign on through unique password protection • Passwords to be changed routinely • Life Science Companies to abide by the established Prescription Medicines Code of Practice Authority (PMCPA) Code of Practice and Department of Health (DH) governance on the use of healthcare data by Life Science Companies with health and social care All data on Meditrends Online will be aggregated data with small number suppression as described below in Processing Activities (Data Release). Purpose 2): Custom Analysis Meditrends Limited receives requests for suppressed, aggregated, non-sensitive, non-identifiable tabulated data both on an ad-hoc basis and as part of longer term healthcare development projects. These requests may be limited to the provision of aggregated HES data or may require the provision of analysis and interpretation. The analyses Meditrends Limited undertakes are complicated and are required in rapid timeframes to achieve NHS and social care project objectives. In all cases, projects are led by NHS organisations or by other organisations in partnership with or in response to requests for information from NHS organisations or affiliated bodies, including NICE. Two examples of projects undertaken are: • Deep Vein Thrombosis (DVT) : 25,000 people in the UK die from preventable hospital-acquired DVT. Working with our client and a leading NHS vascular specialist clinician, Meditrends Ltd carried out a HES based analysis, looking at the economic and clinical impact of preventable deep vein thrombosis. The results were used to develop and support non-branded education and awareness programme for patients and clinicians in hospitals in England. This campaign was designed to complement the introduction of mandatory in-patient DVT assessment across NHS England. • Healthcare Resource Group version 4+ (HRG4+), Proposed Introduction: In response to planned structural changes to the Healthcare Resource Grouping (HRG) system, whereby trusts are reimbursed for procedures carries out, Meditrends Limited was requested to undertake an analysis of the impact of the introduction of complications and co-morbidity stratification in HRG4+ on heart surgery NHS national tariffs. By analysing historic HES data Meditrends Limited identified the key co-morbidities that drove variation in tariff outcomes across the 30 designated heart surgery centres. Meditrends Ltd prepared non-branded, educational material for distribution to all relevant centres alerting them to the impact of the changes which in some cases may have a material impact on centre viability. The construction of these analyses are highly dynamic in nature requiring Meditrends Limited to work in an iterative fashion to analyse data, assess outputs, refine search and resubmit until the exact answer to the initial question has been found. Typically, the process takes several iterations to achieve the required outputs. Historically, 80% of custom projects have not focussed on specific pharmaceutical products but have involved developing understanding and awareness of epidemiology, burden of disease on the NHS and patient treatment pathways. However, a minority of projects have been focussed on specific products where there is also a benefit to Health and Social Care. Examples from two different projects involving the management of multiple sclerosis are: • NICE Health Technology Assessment (HTA): In the NICE Technology appraisal of a novel Multiple Sclerosis (MS) agent the manufacturer was asked to address questions raised in the evaluation report about current treatments for MS relapse. Meditrends Limited undertook an analysis of admission patterns and costs associated with MS relapses, By providing evidence of actual clinical practice in England in respect of the administration of intravenous corticosteroids post relapse, NICE approval facilitated which made the treatment accessible to MS patients in England. Since NICE approval an estimated 8,000 MS patients have benefitted from this therapy • MS Treatment Outcomes: In response to requests by clinicians at NHS MS centres for evidence of efficacy in UK clinical practice and beyond the period studied in clinical trials, Meditrends Limited worked with the developer of natilizumab, a novel disease modifying agent to undertake an cohort analysis, following MS patients over a period of four years before and after start of treatment. Meditrends Ltd were able to demonstrate significant improvements in patient outcomes in terms of reducing the number of hospital admissions, emergency admissions and length of stay. Because HES data allowed follow up beyond the length of clinical trials it contributed to understanding the costs and benefits to the NHS of use beyond clinical trial period. The results of the analysis were shared with neurologists from major MS centres in a non-branded advisory board and presented as a poster in 2013 at the annual conference of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). An update of this analysis is currently being prepared for a publication in a peer reviewed journal. Other recent studies have used HES data to help clients engage with NHS organisations at national and sub-national (e.g. CCG, hospital trust) level to demonstrate the potential clinical and financial impact of new treatment pathways in a variety of fields. These include: • Pulmonary arterial hypertension: a study undertaken to improve patient management by analysing local variations in access to optimal treatment pathways and compliance with NICE guidelines. • Parkinson’s disease: An epidemiological study of comorbidity and clinical burden of patients with advanced disease to support with planning for the cost-effective introduction of a novel treatment pathway. • Diabetes: Analysis of the burden of disease of this chronic condition to support local monitoring and patient management. • Age-related macular degeneration: Comparison of alternative treatment pathways in preventing blindness and to demonstrate the cost benefit of an innovative approach to treatment in support of an anticipated NICE appraisal. • Heart/renal failure: Study to understand the predictors of renal complications in heart failure patients to facilitate introduction of a new treatment to potentially prevent or delay progression to renal failure dialysis. • Deep vein thrombosis: Providing evidence to support an educational programme supporting preventative treatment to avoid complications following surgery. • Acute Lymphoblastic Leukaemia (ALL): Analysis of referral patterns and treatment pathways to improve patient access and optimise delivery of treatment. • Heart Valve Disease (multiple projects): Demonstrating the beneficial outcomes following surgical correction of valve defects in patients with mitral and aortic valve disease. • Crohn’s disease/ulcerative colitis: Comparison of the impact on clinical budgets of hospital and home delivered treatment options. • Critical limb ischaemia: Analysis of risk factors in patients with peripheral vascular disease to support registration and introduction of a new treatment to prevent complications leading to amputation. • Bladder cancer: Assessment of the clinical and financial impact of a new diagnostic technique to improve detection and resection rates. • Neuroendocrine Tumours (NET): Epidemiological study to assess potential impact of a new treatment providing symptomatic relief in a small sub-group of NET patients. • Respiratory disease in infants: Epidemiological study of infections with respiratory syncytial virus (RSV) in vulnerable infants to support ongoing vaccination programme. In every case, the ultimate beneficiary, either directly or indirectly has been the Health and Social Care system. Amongst other benefits, the analyses, reports and tools provided have positively promoted the delivery of healthcare by: • Supporting the commissioning cycle by facilitating evidence-based decision making at a local level. • Enabling the introduction of new treatment options by providing real world evidence of cost-effectiveness and improved clinical outcomes to commissioners, providers and national bodies such as NICE. • Helping to improve clinical practice by supporting the delivery of educational programmes. The potential users of custom analyses are: 1. Public Sector Organisations responsible for the planning, evaluation, commissioning or provision of health and social care including: a. NHS-GPs, Commissioners, Acute Trusts, Area & Regional Teams, Strategic Clinical networks; b. Government & government aligned groups: DH, NHS England, NICE and Academic Health Science Networks (AHSN); c. NHS England Commissioning Support Units (CSUs) 2. Patient support groups & other health related charitable organisations; 3. Life Science Companies (pharmaceutical, medical technology, and medical biotechnology) Customers are typically requiring analysis covering 15 year trend analysis across the national footprint. All Life Science Companies are required to be members of the Association of British Pharmaceutical Companies (ABPI); the UK BioIndustry Association or the Association of British Healthcare Industries (ABHI). Since 2007 Meditrends Ltd t/a Beacon Consulting has provided HES analyses to around 20 different organisations in the UK pharmaceutical and device industries. Typically there are four or five active projects at any particular time. Although the potential users of Meditrends Online are all of the above groups, the data can only be used for the purposes listed above, with the ultimate beneficiary in all cases being the NHS and Social Care. As part of the contract it will be mandatory for 3rd parties to specify in advance their publication and communications plan to ensure that the results of the analysis are delivered to in a non-promotional manner to the benefit of health and social care. All analyses outputs that use HES include small number suppression as described under Processing Activities (Data Release).