IPSOS CQC COVID-19 inpatients study

This agreement has been submitted by Ipsos Market and Opinion Research International (MORI) on behalf of the Care Quality Commission (CQC). The NHS Patient Survey Programme collects data on the experiences of patient using NHS services. It enables patients to provide feedback in a structured, statistically robust manner, providing data that can be used for regulation and service improvement. The programme has run since 2002 and uses robust methods which have been tested and developed over time. However, there was no survey running at the peak of the COVID-19 initial outbreak, and CQC considers patient experiences of care from this period to be a valuable tool informing planning and response to any second peak, and also to good quality on-going care.

CQC will publish a national and regional picture of the experiences of patients admitted and diagnosed with COVID-19, compared to those without. This information can be used by the regulator and system partners going into Autumn 2020 as Ipsos MORI and CQC plan for a potential second wave. The data will also inform more targeted work, including providing ICS and STPs directly with data allowing themselves to be benchmarked against peers for patient experience. Data is also going to inform the developing work CQC has started looking at Provider Collaboration during the crisis, with a view to supporting greater integrated response from services. The data, based at ICS/STP level will be essential to ensuring patient voice on experiences of how well services were integrated can be heard.

The research is being carried out to help the Care Quality Commission and system partners understand the experiences of patients who have been admitted to hospital with COVID-19, compared to those admitted for non COVID reasons. Data will be used to inform planning and improvements in care in the event of a second significant wave of COVID-19 related admissions. It will provide information at a national, regional and Integrated Care System (ICS)/ STP level on how safe, effective, caring and responsive care has been. By commissioning rapidly, CQC have an opportunity using existing NHS Patient Survey programme infrastructure to deliver evidence that can be used to inform planning and response of services during any second COVID-19 spike, as well as supporting the on-going care of those continuing to be admitted with COVID-19.

CQC will gain an understanding of people’s experiences of hospital care through the pandemic, which can be disaggregated to consider the views of people from different demographic backgrounds, region or ICS. CQC will have up to date information of the experiences of those with COVID-19 that can inform our regulatory response and support NHS acute trusts and wider integrated care systems. In the event of a second COVID-19 spike, this information can support better care experiences for patients.

The Care Quality Commission believe there are no moral or ethical risks. Similar questionnaires, methods and supporting materials have been used on the NHS Patient Survey Programme for other surveys e.g. the Adult Inpatient Survey. These materials and methods have been reviewed on numerous occasions by the Health Research Authority and the Confidentiality Advisory Group, and received favourable ethical opinion.

The questionnaire will ask about patients' experience of their stay in hospital and based on the current Adult Inpatient Survey, which covers the following areas:

- pre-admissions, admissions and triage

- hospital ward

- doctors and nurses

- care and treatment

- communications

- discharge and support

The research team at CQC and Ipsos MORI are consulting with various stakeholders (within CQC, hospitals and patients) in order to ensure that the questionnaire reflects recent experiences in relation to COVID-19.

Note that there will be no further follow up or contact with these patients as a result of them taking part in this research, their contact details will only be used for the purpose of collecting this information.

USE OF THE DATA

The data will be used to invite patients to complete a questionnaire on their experiences of NHS Hospital Care. This data will be analysed and reported at national, regional and ICS/STP level.

The survey will utilise similar questionnaire, supporting materials and methods as have been used since 2004 as part of the NHS Patient Survey Programme. With five surveys within the Programme, two of which run annually, Ipsos MORI methods and infrastructure have been tested and found workable before.

Ipsos MORI are liaising with colleagues at NHS England and NHS Improvement to ensure questions asked will provide aggregated results that are useful for their needs. The work will support CQC in delivering an annual Statement of Care, and also feeding into forthcoming ‘Provider Collaboration Reviews’ (a rapid review, launching in September, assessing the proficiency of integrated ways of working across ICS / STPs).

SCOPE

The data requested will be used in order to select a nationally representative sample of adults who have had an inpatient stay during the course of the pandemic. The overall aim of the survey is to complete interviews with 15,400 patients across all Trusts, to allow analysis at STP level. At this stage it is estimated that the response rate to the survey will be around 50%, which means contacting around 30,000 patients. The research will be used to help the Care Quality Commission and system partners to understand the experiences of patients who have been admitted to hospital with COVID-19, and those who have been admitted for non COVID-19 related reasons. Data will be used to inform planning and improvements in care in the event of a second significant wave of COVID-19 related admissions.

For this study, CQC will use data to provide a national, regional and ICS/STP level analysis of patients’ experiences of care that can be used to drive improvements in planning and care delivery. Data will be used to inform a forthcoming review of how well services have worked together across local systems and to provide data to local areas to inform planning for a subsequent significant recurrence of COVID-19.

Aggregated, non-identifiable data will be shared with NHS England NHS Improvement Insight colleagues who are collaborating with questionnaire design, to feed into their patient experience priorities. Question level data will also be shared directly with ICS/STP partners to use for improvement purposes.

A small number of NHS Trusts and patients have been invited to contribute to the questionnaire design phase.

The research aims to contact a representative sample of patients who have had an inpatient stay (of one night or longer) over the period of the pandemic in an acute and specialist NHS hospital. This will include patients who have been affected by COVID-19 – either admitted with COVID-19 or diagnosed during their stay – and non-COVID-19 patients. All must have been subsequently discharged. the exact dates of the extraction will depend on the data available from the HES APC data set, but at this point discharge figures will be available for April and May 2020.

A number of exclusions will apply, including deceased patients, children or young people aged 16 or under, day cases, private patients, those without a UK addresses or with an unusable address, records flagged as FP69, sensitive or invalid records, test records, patients known to have requested their details are not used for any purpose other than their clinical care, duplicates. Obstetric and maternity service users, patients admitted for planned termination of pregnancies and psychiatry patients should also be excluded as the experiences of these patients are being captured under other specific questionnaires.

To conduct the survey Ipsos MORI needs a sample of inpatients aged 16+ in England discharged between April and May 2020, made up of patients admitted with COVID-19 or diagnosed with COVID-19 during their stay, and non-COVID-19 patients. The sample is expected to be drawn from the HES Admitted Patient Care (HES APC) data set. As explained in the Processing Activities, Ipsos MORI is first requesting pseudonymised records of the whole eligible population, from which Ipsos MORI will draw a sample. Names and contact details will be required only for the sample drawn.

Patients will be invited to take part in the survey online or by telephone, and will be notified of the survey through an advance letter, followed by a series of reminders (letter and SMS), and ultimately a telephone call (if they have a number available on the sample). The contact strategy for the survey aims to encourage patients to take part online first (cheaper and less intrusive) but then goes on to offer telephone completion (to be more inclusive for those who cannot or are not able to take part online). Best practice in research suggests that contact with patients should be legitimised by an initial mailing letter, clearly setting out the survey purpose and aims, including transparent information about how the data will be used in line with GDPR requirements. This will then be followed with a reminder strategy that builds on the original messaging and motivations using a range of means of contact. All patients will have had at least 2 contacts prior to receiving a telephone call (and up to 4 if they have a mobile number).

Only certain fields from HES APC will be needed at each stage (See Processing Activities). The two-stage process (provision of pseudonymised whole population records followed by the names and contact details for the sample drawn) is necessary so that Ipsos MORI can review the population profile, and advise CQC about the most appropriate sample design. It will also minimise the burden on NHS Digital as it will allow Ipsos MORI to draw the sample from pseudonymised records.

In terms of geographical spread, the data requested should cover the whole of England, in line with CQC’s remit, and because analysis is needed at STP level.

There are no viable alternative and less intrusive ways of collecting reliable feedback from Covid and non Covid inpatients about their stay in hospital during the pandemic – an opt in approach would not generate statistically robust data in a timely manner and would not be affordable. The 2020 adult inpatient survey fieldwork will take place in January/February 2021 which will be too late to capture inpatient's experiences during the pandemic while it is still fresh in their mind. Capturing inpatients’ experience during the pandemic is essential to plan for a potential second wave.

DATA CONTROLLERS AND DATA PROCESSORS

The Data Controller for this project is CQC and the Data Processor is Ipsos MORI. Two approved suppliers from Ipsos MORI will also be involved:

1. Formara, which will send out invitation letters to patients so they can take part in the survey, and

2. Text Local, which will send SMS with a unique link to the online survey to each patient with a mobile number.

The data they will have access to are listed in Processing Activities.

LEGAL BASIS

The lawful basis for processing is Article 6(1) (e) - “processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller”.

CQC͛s remit is to make sure health and social care services provide people with safe, effective, compassionate, high-quality care and CQC encourages them to improve. It does that through effective monitoring and inspection activity underpinned by an Intelligence insight programme that draws together risk and bench marking metrics. For this study, CQC will use data to provide a national, regional and ICS / STP level analysis of patients’ experiences of care that can be used to drive improvements in planning and care delivery. Data will be used to inform a forthcoming review of how well services have worked together across local systems and to provide data to local areas to inform planning for a subsequent significant recurrence of COVID-19.

The survey will involve processing special category data in relation to the health and ethnicity of individuals taking part. The results will be used for processing relevant information to support the current efforts of the Care Quality Commission to support the NHS and other system partners in their response to the ongoing COVID-19 pandemic.

Processing of special category data will not rely upon point (g) of Article 9(2) of the GDPR for a lawful basis.

Processing will rely upon item (i) of Article 9(2) as the purpose of the survey is to inform planning and improvements in care in the event of a second significant wave of COVID-19 related admissions, so as to improve the effectiveness and efficiency with which care is provided and to protect public health.

Personal data processed for the purposes of the study, including special category personal data, will be subject to the provisions of CQC's function under section 48 of the Health and Social Care Act 2008 that permits CQC to conduct any special review or investigation into the provision of NHS care, the commissioning of NHS care, or into the provision of care or services or the exercise of functions by bodies or persons generally or by particular bodies and persons. Care Quality Commission’s (CQC) statutory powers under section 64 (part 1) of the Health and Social Care Act 2008 allow CQC to require information from all registered providers as well as key organisations in the oversight of health and social care; for example, local authorities and NHS Digital (Health and Social Care Information Centre). These powers are constrained by the application of CQC’s Code of Practice for Confidential Personal Information that requires all consideration of the use of (potentially) identifiable data to meet the necessity test.

Data requested will be in two stages:

1. one drop of pseudonymised record level HES APC data for all individuals 16 years and over who have been admitted to acute and specialist NHS hospitals (and subsequently discharged). They must have had at least one overnight stay during the time-frame of 1st April 2020 to end of May 2020. This will be linked to demographic data for application of exclusion criterion to HES APC data prior to dissemination.

Data will include (Study ID), Gender, Age bands (16-19 years old at date of extraction, then 5 year bands from 20 years old onwards at date of extract), trust code (at discharge), admission and discharge dates, and COVID-19 diagnosis (admitted with COVID-19, COVID-19 diagnosis during stay, other).

This pseudonymised data set is required so that Ipsos MORI can look at the population profile and advise CQC about the most suitable sampling approach for the survey.

2. An identifiable record level drop of linked Demographics and HES APC data (patients full name, address including postcode, telephone number -landline and mobile, month and year of birth, and site code at discharge) based on a list of study IDs provided by Ipsos MORI.

This identifiable data set is required to enable people to be invited to take part in the research.

METHOD:

1. Ipsos MORI will first request NHS Digital to create pseudonymised records using HES APC data of all inpatients aged 16 years old and over who have been admitted to acute and specialist NHS hospitals (and subsequently discharged). They must have had at least one overnight stay during the time-frame of 1st April 2020 to end of May 2020.

2. NHS Digital will add a Study ID to pseudonymise the data set and include Gender, Age bands (16-19 years old at date of extraction, then 5 year bands from 20 years old onwards at date of extract), trust code (at discharge), admission and discharge dates, and COVID-19 diagnosis (admitted with COVID-19, COVID-19 diagnosis during stay, other).

Exclusions criteria will apply:

• deceased patients

• children or young persons aged under 16 years at the time of sampling

• obstetrics/maternity service users, including spontaneous miscarriages

• patients admitted for planned termination of pregnancy

• psychiatry patients

• day cases

• private patients (non-NHS)

• patients without a UK postal address or patients whose address was unusable because it was incomplete

3. NHS Digital will send the resultant pseudonymised data to Ipsos MORI via NHS Digital's Secure File Transfer Service (SEFT).

4. Ipsos MORI will then draw a sample of records from that pseudonymised data sets based on the sampling approach agreed with CQC. Ipsos MORI will send the pseudo-Study-IDs back to NHS Digital via NHS Digital's Secure File Transfer Service (SEFT).

4. NHS Digital will take Pseudo Study-IDs and append patients full name, address including postcode, telephone number (landline and mobile), month and year of birth, and site code at discharge. NHS Digital will disseminate the identifiable data back to Ipsos MORI via NHS Digital's Secure File Transfer Service (SEFT).

CQC will not have access to any identifiable data at any point during the survey, unless a disclosure of harm or a safeguarding issue is raised by a patient during an interview. Depending on the disclosure made, it may have to be escalated to CQC – patients would be made aware of this and if possible and appropriate their consent for the disclosure would be sought. The advice of Ipsos MORI disclosure board would be sought prior to any disclosure being made.

Ipsos MORI will then remove incomplete addresses from the sample and prepare a final master sample file. This will include the data fields first provided by NHS Digital (the identifiable and non-identifiable data will be linked at that stage, by the Ipsos MORI project team). Trust codes at point of discharge will be used to append STPs to each record – the data mapping STPs with trust codes is publicly available. All samples files with identifiable data will be saved encrypted and password protected, on a segregated part of Ipsos MORI server, with access given to the project team only. All project team members are permanent members staff employed by Ipsos MORI. They are required to abide to Ipsos MORI policies on information security, data protection and physical security (attached) and have received training on these. Ipsos MORI will process and store the data sets provided by NHS Digital in line with these policies.

Specific sample files will be prepared for internal and external suppliers for the purpose of conducting the survey, which will contain only the relevant fields needed for the task:

• The sample for the online team will only include unique identifiers created by Ipsos MORI. The online team at Ipsos MORI will append unique links to the online survey for the SMS survey invitation and unique log in details (username and password) for the printed survey invitation.

• The sample for the printing supplier, Formara, will only include a unique identifier (created by Ipsos MORI), title, name, address, and unique log in details to the online survey. Formara will print and send out the survey invitations and the reminders a few days later. The letter will invite people to complete the survey online or over the phone, and will be sent by Whistl.

• The sample for the SMS supplier, Textlocal, will only include unique identifiers (created by Ipsos MORI), mobile numbers (for patients that have one), the site name at discharge (to be inserted in the text message), and a unique link to the online survey. Textlocal will use these to send survey invitation (and reminders) by text message with a link to the survey, and these will be sent about at the same time as the printed letters.

• Ipsos MORI will provide a reminder sample to Formara and Textlocal a few later, excluding patients who have already taken part in the survey or have opted out. The samples provided to these suppliers will contain the same fields as before.

The sample for Ipsos MORI telephone centre will only include the information needed to call patients to invite them to take part in the survey and to monitor the fieldwork (e.g. check number of interviews achieved in each STP with COVID-19 vs non-COVID-19 patients). It will only include patients who have not taken part online by a certain date, or who have requested a telephone interview. Telephone interviewers will only see the information they need to conduct the interviews, i.e. the names and phone numbers of the people they are calling.

Formara - Printing of all letters and outer envelopes. Enclosing of all packs. Delivery of packs to Whistl for dispatch.

Whistl - Collect questionnaire packs from Formara. Dispatch all questionnaire packs to Royal Mail via downstream access.

Textlocal - Textlocal Sending text messages to selected participants.

Formara, Whistl and Text Local are both approved Ipsos MORI suppliers (subcontractors) which means that they are also certified to ISO 9001 and ISO 27001 and an Article 28 compliant data sharing agreements are in place. They are not considered Data Processors in this application as they each have a Data Sharing agreement with Ipsos MORI and CQC for the services performed.

Once the fieldwork is complete, the survey data will be weighted and analysed by Ipsos MORI and some of the sample information will be linked to the survey responses for that purpose (STP, trust code, gender, age bands, COVID-19 patient vs non-COVID-19 patient).

Personal identifiable data (e.g. name and contact details) will be securely deleted from Ipsos MORI systems within a month of project completion. Only aggregated date with small number suppression applied as per the HES Analysis Guide will be kept after that date.

HES DISCLOSURE CONTROL / SMALL NUMBER SUPPRESSION

In order to protect patient confidentiality, when presenting results calculated from HES record level data, outputs will contain only aggregate level data with small numbers suppressed in line with HES Analysis Guide. When publishing HES data, you must make sure that:

· cell values from 1 to 7 are suppressed at a local level to prevent possible identification of individuals from small counts within the table.

· Zeros (0) do not need to be suppressed.

· All other counts will be rounded to the nearest 5.

Data will not be made available to any third parties other than those specified except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide.

At the end of fieldwork data will be weighted to ensure it is representative of the profile of patients who were admitted as inpatients within the given time-frame. Ipsos MORI will then provide data tables and a clean SPSS file to CQC. The tables are expected to contain key cross-breaks such as COVID-19 patients vs non-COVID-19 patients, age band, gender, region, length of admission, etc. Filtered, regional or STP tables will also be provided.

On the tables, cells with fewer than 8 cases will be aggregated to ensure no respondent can be identified, as per the HES Analysis Guide. The data tables and SPSS file will not contain any identifiable information but in the SPSS file it might be able to identify a survey respondent by combining some variables in small STPs. For that reason access to the SPSS file within CQC will be restricted to named members of staff and anyone accessing it will be required to sign a data sharing agreement.

The data tables will be supported by a short technical note on how the survey was conducted along with information around response rates.

PowerPoint reports may also be provided, at national and STP levels. STP levels reports would be automated and ready to be used by STPs.

Ipsos MORI will provide the above outputs to CQC in September 2020.

A report setting out results comparing the experiences of care for COVID-19 and non COVID-19 patients will be produced, showing results for national and regional level care. Data tables will be produced to provide results to ICS/STPs to use for local planning and improvement purposes.

Results will inform content of the CQC Annual State of Care Report, which is being expanded to include a focus on the impact of the pandemic in 2020. Results will also be used to contribute to findings from Provider Collaboration Reviews taking place during September 2020. Further engagement activities are currently being discussed with Engagement colleagues.

Ipsos MORI will be sharing the statistical outputs from this work as soon as sufficient quality assurance has been conducted. The final outputs will not contain any patient identifiable information, only aggregate scores and suppression applied as per the HES Analysis guide. Results will be published on the CQC website. This will be supported by email correspondence with partners from across the healthcare system to raise awareness of the available data and encourage secondary use.

The end product from this survey will be a set of aggregate statistical data that does not contain patient identifiable information. This statistical data set will be used to produce a national report on the experiences of people admitted to hospital with COVID-19 as well as filtered tables which detail results for each individual NHS region and ICS/STP. These results will be shared and presented to partner organisations across the Healthcare system to inform their ongoing care of those continuing to be admitted with COVID-19.

The outputs will be used to:

(1) compare experiences of COVID-19 inpatient experiences across region and STP/ICS – presenting an opportunity to learn from areas of best practice,

(2) inform planning and response of services during any second COVID-19 spike, as well as supporting the ongoing care of those continuing to be admitted with COVID-19.

Once results have been sufficiently quality assured they will be uploaded to the CQC website. Ipsos MORI will be supported in communicating the results by our CQC Engagement Team. Activities are likely to include engagement with media and partner organisations across the healthcare system to raise awareness of the available data and encourage secondary use.

The target date for sharing of reporting outputs is September 2020.

Ipsos MORI plan to run a rapid, yet robust survey of the experiences of people admitted to hospital with COVID-19 during the peak of the pandemic. Ipsos MORI have expanded the scope of this work to include non COVID-19 admissions to allow comparisons between the two distinct cohorts. This survey will provide statistically robust results at a national, regional and Integrated Care System (ICS)/ STP level on how safe, effective, caring and responsive care has been.

By commissioning rapidly, Ipsos MORI have an opportunity using existing NHS Patient Survey Programme infrastructure to deliver evidence that can be used to inform planning and response of services during any second COVID-19 spike, as well as supporting the on-going care of those continuing to be admitted with COVID-19.

CQC will gain an understanding of people’s experiences of hospital care through the pandemic, which can be disaggregated to consider the views of people from different demographic backgrounds, region or ICS. This information will be shared with organisations across the healthcare system to facilitate and feed into their own local improvement work. The NHS Patient Survey Programme has significant experience of sharing actionable patient experience data to draw upon.

CQC will have up to date information of the experiences of those with COVID-19 that can inform our regulatory response and support NHS acute trusts and wider integrated care systems. In the event of a second COVID-19 spike, this information can support better care experiences for patients.

This survey will be the first of its kind, and is a unique opportunity to provide valuable, robust, comparable data to the healthcare system during this ongoing public health crisis. The data gathered will serve the public interest as it will be shared with system partners to inform their planning and response of services during any second COVID-19 spike, as well as supporting the ongoing care of those continuing to be admitted with COVID-19. Ipsos MORI have developed a methodology which will allow them to report robust findings at pace, with their aim being to publish results in September 2020. The success of this survey is dependent on being able to draw a representative centralised sample, as it would not be feasible to have samples drawn locally within the timescales they are working to.

The end product from this survey will be a set of aggregate statistical data that does not contain patient identifiable information. This statistical data set will be used to produce a national report on the experiences of people admitted to hospital with COVID-19 as well as filtered tables which detail results for each individual NHS region and ICS/STP. These results will be shared and presented to partner organisations across the Healthcare system to inform their ongoing care of those continuing to be admitted with COVID-19.

Ipsos MORI will be sharing the statistical outputs from this work as soon as sufficient quality assurance has been conducted. The final outputs will not contain any patient identifiable information, only aggregate scores with small number suppressed in line with the HES Analysis guide. Reports will be published on the CQC website and issued directly to ICS/STPs. Findings will also be shared with partners from across the healthcare system to raise awareness of the available data and encourage secondary use.

The outputs will be used to (1) compare experiences of COVID-19 inpatient experiences across region and STP/ICS – presenting an opportunity to learn from areas of best practice, (2) inform planning and response of services during any second COVID-19 spike, as well as supporting the ongoing care of those continuing to be admitted with COVID-19.

The overall aim of the survey is to complete interviews with 15,400 patients across all Trusts, to allow analysis at STP level. At this stage it is estimated that the response rate to the survey will be around 50%, which means contacting around 30,000 patients. This is a potential measure of the burden of the survey for participants (average length of around 15 minutes to complete). However, the benefits in terms of future number of patients and potential cost/efficiency savings will be measurable in relation to improvements to care that can be implemented in response to a potential second wave of the virus.

There will be multiple expected benefits from this work, CQC will benefit as the data will be used in Ipsos MORI's regulatory response and support NHS acute trusts and wider integrated care systems.

Third party beneficiaries include partners across the healthcare system and the general public who will use hospital inpatient services in the future.

Engagement with results can be measured through social media, interactions with the website and broader media activity.

Ipsos MORI expect benefits to be achieved during Autumn 2020 as soon as results are disseminated across CQC and with partner organisations. They will help to inform panning for future COVID-19 resurgence.

Yielded Benefits is not a requirement for new applications.