Data Requests

PICANet can offer data from PICANet reporting periods that have occurred already, that is, data that has been published. (Typically, we publish a year’s data at the end of the next year.)

Please look at our Data Collection page and Data Manuals to understand what data fields PICANet collects and to inform what you plan to request. You may also want to see and utilise data already reported and publicly available, via our Reports and Annual Report Archive.

PICANet collects and can provide data from Paediatric Intensive Care Units (PICUs) and Specialist Paediatric Transport Services (SPTS) in England, Wales, Scotland, Northern Ireland and Republic of Ireland.

We are also are undertaking an expansion project to include data collection and reporting from Level 2 PCC units. This data collection is in its infancy and cannot be provided.

Requests may be made for either anonymous aggregate data, or deidentified patient level data, depending on the requirements of your project. PICANet is required to follow data minimisation guidelines, so you will need to request the minimum data / data fields you need for the work you are doing.

Data may be requested for Research purposes, or Service Evaluation / Clinical Audit / Other purposes. See ‘Process for Requesting Data’ section for a link to definitions of these purposes and explanation on the differing types of PICANet application for each.

You can request data for data linkage purposes, for example directly linking PICANet data with external data, by using identifiable information. This requires appropriate Information Governance permissions (see ‘Ethics and Governance Reminders’ section) as well as mapped out data flows, covering where linkage identifiers will be sent and how linked matches will be reported. We normally expect that a third party is used for linkage, for example NHS England. Northern Ireland and Republic of Ireland are excluded from use for linkage, as PICANet does not hold identifiers for these nations.

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If you are from an organisation participating in PICANet and need data for your own organisation only, you do not need to go through the Data/Information Request process. You can download your data locally through PICANet Web. Please contact PICANet if you need any guidance: picanetdataaccess@leeds.ac.uk. Please note the rest of this webpage will not apply to you.

If you are a study/trial that recruits directly from PICUs/SPTS, we will normally advise a separate Custom Download route, where we can facilitate the relevant sites to supply you with data directly. PICANet will advise further about this as appropriate.

 

We ask that you contact us at least six months before you require data. More notice may be required should your project be complex e.g. if data linkage is involved, or if you are requiring a large amount of data. For minimal data for Expressions of Interest, e.g. for grants, a six week minimum contact is required.

PICANet have created a flow diagram to show the overall process for Data Requests. See this here on our website: PICANet Data Request Flow Diagram.

The steps of the Data Request Process are:

• • • Complete a PICANet Feasibility Form. This asks about the aims and basic details of your project and the type of PICANet data you are looking for.
    • PICANet will review your Feasibility Form, come back to you with queries, then circulate it to our PICANet Clinical Advisory Group (CAG), who may also have additional questions for you.
    • PICANet will advise you on appropriate charges for your project (see ‘PICANet and HQIP Charges’ section).
    • Upon provisional approval of your Feasibility Form, PICANet will advise which of the following types of formal request you will need to make and which paperwork should be completed. The two main types are:

                       Data Request– Fill out a Data Access Request Form (DARF), the latest version of which can be found                                 here: https://www.hqip.org.uk/national-programmes/data-access-requests-information-for-applicants/.                            This type of request is usually for pseudonymised, patient level data and including data linkage projects.

                       Information Request – Fill out an Information Request form (PICANet will supply this to you as                                          required). This is for aggregated data in tables, at a regional or national level.

There may also be differences in paperwork route depending on the type of your project: Research; Service Evaluation; Clinical Audit requests etc. For definitions of these project types please see the HRA Project type Definition Table.

• • • As the applicant it will be your responsibility to complete the required paperwork overall. PICANet will supply some guidance as you start to complete it (see also ‘Specific Form Guidance’ section). More than one PICANet review (including any questions for you to answer) may be required between PICANet and yourself, to finalise the form for sign-off.
    • PICANet will sign and submit your DARF / Information Request form to HQIP, who review forms on a monthly basis via their Data Access Review Group (DARG) meeting. For DARFs, HQIP require submission and payment by specified dates in advance. These can be found on the HQIP website: Data access requests – HQIP. For requests involving Devolved Nations data and/or Private PICU data, PICANet will put a separate Data Sharing Agreement in place and directly approve the data, rather than HQIP.
    • Forms that are reviewed by HQIP are by standard returned with their own specific HQIP queries, that you will need to address.
    • Once requests are fully approved (by HQIP/PICANet), they are queued by PICANet for PICANet production/processing. This may include application of the National Data Opt-out (NDO) if applicable (see ‘Ethics and Governance Reminders’ section).
    • PICANet will advise you as fully as possible at each step of the process. All communication should be via the following address please: picanetdataaccess@leeds.ac.uk

Please note: PICANet data may be kept/retained for a minimum of one year. If you have made a Data Request, you will need to make an annual renewal application to extend data retention if needed (see also ‘Charges’ section). You will be required to inform PICANet or HQIP that you have destroyed data at the end of the study. For Information Requests this limit does not apply (see next section also).

For Data Requests and Custom Downloads:

HQIP costs

For Data Requests only. HQIP have published charge categories and a fee structure for English Data Access, available on their Website. This covers new applications, amendments and annual extensions.

PICANet costs

For Data Requests and Custom Downloads. Fees are nominal, based on the type and complexity of the request and the number/ frequency of extracts. Clinical input into the feasibility of requests is included free of charge.

Fees will be agreed when feasibility has been established. You should include these costs in any grant funding but you should also talk to the PICANet team before applying for funding.

Charges to commercial organisations will be determined on a case-by-case basis.

Should there be changes to the scope thereafter; fees will be subject to review.

We provide the following as a guide:

Type	PICANet fee
Basic request	£1,000 + VAT (£1,200)
Complex data request E.g. data linkage and/ or data management required over a sustained period.	£2,500 + VAT (£3,000)
Custom download	£2,500 + VAT (£3,000) for set-up and first year. £500 + VAT (£600) for each additional year that the download is active. Added to the initial charge.
Custom data collection	£4,000 + VAT (£4,800) for set up and first year. £500 + VAT (£600) for each additional year that the download is active. Added to the initial charge.
VAT will be charged at the current rate where applicable.

If you are member of the paediatric critical care community at a participating organisation, please note the following:

• Requests for support relating to the use of your own data for quality improvement purposes will not be charged.
• If your project has limited funding, you can contact us to enquire about a discretionary PICANet fee waiver and/or discuss how you may be able to utilise data already reported and publicly available on our Reports and Annual Report Archive

Information Requests:

There are no charges associated with Information Requests.

Please see ‘Process for Requesting Data’ for definitions of Data Request / Information Request etc.

We ask that you contact us at least six months before you require any data.  We may need longer to process a request should it be complex e.g. if data linkage is involved or if you are requiring a large amount of data. Please be aware that some delays are out of PICANet’s hands, e.g. where with a third party is involved for approvals and/or linkage. For data for Expressions of Interest e.g. for Grants, a six week minimum contact is required.

Roughly half of request processing time will involve developing your application with PICANet and the second half finalising with HQIP (where submitted via HQIP).

Please note that the PICANet team receive a large number of requests for data and to handle these we prioritise our workload, depending on capacity and need. Your request may be placed in a queue at different points of the process. We will communicate to you where your request is placed and what we require from you at that point, so we can continue to progress it effectively.

If at any point we are unable to process new requests within a typical timeframe, this will be communicated clearly, for example on this webpage.

This section is for reference when specifically completing the forms mentioned. Please refer to ‘Process for Requesting Data’ section for full guidance on the processes related.

Feasibility Form

The purpose of the Feasibility Form is to assess overall whether your request can begin to be progressed. It is reviewed by the PICANet Data Request team & PICANet Clinical Advisory Group (CAG). It will also help to clarify your request in terms of broad criteria and scope, before progressing to formal request. Please complete all items on the form. PICANet will provide further guidance during the process.

Return all Feasibility Forms to picanetdataaccess@leeds.ac.uk

Data Access Request Form (DARF)

PICANet will provide full advice on completing the DARF during the process.

In advance of completing your DARF, however, please thoroughly refer to our Data Manuals and Data Collection page for reference on which data fields you will be requesting. Data fields will need to be listed specifically and individually on the DARF, with justifications for each one, e.g. why it is necessary for your request.

Any diagnoses, conditions, comorbidities or interventions required from PICANet will need to be referenced as READ codes (version 3).

When PICANet review your form, we will advise on any standardised data formats or groupings for data you have requested where applicable, as well as any relevant caveats.

The PICANet Dataset Changes Over Time document is also published for you to assess how PICANet data has changed over the course of our history, aiding you to request the most accurate data. Please read this document before submitting your request to us.

Return all DARFs to picanetdataaccess@leeds.ac.uk.

Information Request Form

PICANet will provide any specific advice on completing the Information Request form during the process. We ask for all requests involving a desired tabular output, that you provide shell a.k.a. draft tables to us, so we can see what the nature of your output will clearly look like.

Please note that Small Number Suppression is applied to Information Requests, for aggregate numbers greater than 0 and less than 5. This means that numbers 1 to 4 will be displayed in your results/table as ‘<5’. It is advisable to consider this when choosing an inclusion criteria; and how far you want data broken down by.

Return all Information Request Forms to picanetdataaccess@leeds.ac.uk

If you are submitting a Data Request Form (DARF) for a Research purpose, you will need to consider and obtain where required the appropriate HRA CAG and Ethics approvals. If you are unsure if your project is Research or Other, use the HRA (Health Research Authority) decision tool to find this out.

PICANet’s Research Database has a favourable ethical opinion from the Research Ethics Committee with generic approval for external researchers. In certain cases data may be supplied for Research projects under this approval.

If you are applying to use identifiable data (data including direct identifiers), you will need a legal basis to do this. This would usually be informed patient consent and/or S.251 CAG approval.

For Data Requests you will also need to link to your organisation’s Fair Processing Statement, as well as PICANet’s (PICANet’s found here), so make sure you have access to your own. You will also need to provide full Data Protection assurances, including specifics on how data will be stored securely (relevant questions all on the DARF).

Please be aware that as of 31st July 2022, all requests are reviewed to determine whether PICANet will need to run them through the National Data Opt-Out (NDO) register for England. If the answer is Yes, we would therefore exclude English opted-out records from your request. Usually, this is the case should you request fields that would require PICANet to process identifiers directly and/or beyond our usual scope. We will advise on this applicability as your request progresses. You can visit the NHS England National Data Opt-Out open data dashboard for rates of NDO in the population, with demographic breakdowns.

In all publications and presentations that have made use of PICANet data, there should be an acknowledgement to PICANet for provision of this data and to all NHS staff involved in data entry to PICANet. Please also include the PICANet reference number (PXXX/CXXX as confirmed during your request process).

If in addition, if you have used data from our Annual Reports, please cite these as follows:

Paediatric Intensive Care Audit Network State of the Nation Report (yyyy) (published mm/yyyy): Universities of Leeds and Leicester.

All publications and presentations should be reported to PICANet, in a timely fashion. We will link to all outputs from our PICANet Projects Supported webpage.

Data Request (DARF) requests, once initially approved, are valid for one year. Should you require your data beyond one year you will need to follow an Annual Extension process via PICANet. For requests involving English NHS data there is a further HQIP fee for this (see HQIP website, where you can also find the HQIP Extension form).

Should you need to make Amendments to the content of Data Requests (DARFs) after they have been approved, you will need to follow an Amendment process via PICANet. For requests involving English NHS data there is a further HQIP fee for this (see HQIP website, where you can also find the HQIP Extension form).

Information Requests do not require annual renewal/extension. If you require new / different information you will need to submit a new Information Request.