Homeless Health Peer Advocacy Evaluation: Primary analyses of Hospital Episodes Statistics

The London School of Hygiene and Tropical Medicine (LSHTM) require access to NHS England data for the purpose of the following research project: Homeless Health Peer Advocacy Evaluation: Primary analyses of Hospital Episodes Statistics

The following is a summary of the aims of the research project provided by LSHTM:

“People experiencing homelessness suffer extreme health inequalities. The average age of death is 45 years for men who are homeless and even younger for women (43 years). They are between 5-7 times more likely to die prematurely than the general population. Owing to limited access to health care and harsh living conditions, people experiencing homelessness are more vulnerable to tuberculosis, hepatitis C, HIV, injury, chronic conditions. Access to health care is hindered by organizational challenges, fear of stigma, and difficulties prioritizing care over the daily demands of being homeless.

As a result, presentation at health care is delayed until it is urgent, leading to frequent use of accident and emergency services. These delays represent potentially not only avoidable ill-health and distress, but also per capita health system costs which are estimated to be eight times higher than the general population. To mitigate health inequities, Groundswell have pioneered the homeless health peer advocacy (HHPA) program among homeless populations in London.

The aim of the HHPA evaluation is to compare the frequency of hospital use (i.e. accident & emergency visits, outpatient appointments, inpatient admissions) between homeless adults who had contact with a peer advocate and homeless adults who did not have contact with peer advocate. Peer advocates are people with lived experience of homelessness who were trained and supported by Groundswell, a homeless service non-governmental organisation which has been commissioned across several London boroughs to improve access to health care.

This research will evaluate how and to what extent the intervention changes the way homeless populations use outpatient and emergency services and how it shapes other health and social outcomes.

The primary outcome for the main quantitative study using NHS England data is the relative probability of attending a scheduled outpatient appointment for HHPA clients compared to comparison participants. Each participant will have a number of outpatient appointments scheduled, of which some proportion would be attended.”

The following NHS England data will be accessed:

• Hospital Episode Statistics Admitted Patient Care – necessary to track the number of inpatient hospital admissions

• Hospital Episode Statistics Outpatients – necessary to assess the number of scheduled and attended outpatient appointments

• Emergency Care Data Set (ECDS) – necessary to track the number of visits to accident and emergency services (without inpatient admission)

All three data sets will be used to measure and account for imbalances between the two comparison groups, and characterise the nature of the hospital visits including gender, age, ethnicity, previous non-attendance at an outpatient appointment.

The level of the data will be identifiable because LSHTM holds the identifying details. However, the data that will be disseminated under this Agreement will contain no identifying details.

The data will be minimised as follows:

• Limited to data for a study cohort identified by LSHTM who have consented to their data being accessed

• Limited to data between May 2020 and December 2022. For each individual patient, data will only be provided from 12 months prior to date of study enrolment and until 12 months after date of study enrolment.

LSHTM is the sole data controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR 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.

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

This processing is in the public interest because there is limited evidence showing the impact of peer advocates on health service utilisation and other health and social outcomes, nor the mechanisms through which the intervention works. Further evidence is expected to facilitate development and scale-up of the intervention among homeless and other vulnerable populations in London and elsewhere. This evidence can support the overarching aim of reducing inequalities in health.

The funding is provided by the National Institute for Health and Care Research (NIHR). The funding is specifically for the project described. Funding is in place until 31/07/2023. Funding to continue the work described will be sought on an ongoing basis.

King’s College London are leading a qualitative study relating to the overall HHPA evaluation. The qualitative study does not involve the data under this Agreement.

Groundswell is a charity that works across London and seeks to empower people who are currently homeless to overcome barriers to accessing health care through the provision of peer advocates, all of whom have experience of homelessness themselves. It is Groundswell’s HHPA programme that is the subject of this broader evaluation, and it is their clients who were recruited to be participants in the quantitative evaluation to which this Data Sharing Agreement relates.

The study steering committee includes members from Heriot-Watt University, the University of Manchester, the University of Exeter, Pathway (a homeless healthcare charity), Tower Hamlets Council, Greater London Authority and St Mungo’s homeless charity.

The research team is committed to participatory methods. People with experience of homelessness are employed as peer researchers or invited to become members of the study steering group. Peer researchers provide advice and input in relation to study processes and associated documents such as the participant information sheets.

The viability of consenting participants for this study and data linkage was informed by a workshop with 13 people with experience of homelessness who were asked whether they would be happy for health, criminal records and hostel information to be linked together for research purposes.

Workshops throughout the study, for participants and for the wider community of people experiencing homelessness, will provide additional opportunities to engage the community in the study’s findings and consult with them over future directions for analysis.

The London School of Hygiene and Tropical Medicine (LSHTM) collect identifiable information and questionnaire data directly from the study participants, and assign a unique person ID.

LSHTM will transfer a cohort linkage dataset to NHS England. The linkage dataset will consist of a unique person ID, with identifying details (specifically forename, surname, Date of Birth, Gender, alongside NHS number, alias and postcode where possible) for the cohort to be linked with NHS England data. An enrolment date to the study, with the unique person ID, will also be provided in a separate spreadsheet.

NHS England will provide the relevant records from HES Admitted Patient Care, HES Outpatients and the Emergency Services Data Set to LSHTM. The data will contain no direct identifying data items but will contain a unique person ID which can be used to link the data with other record level data already held by the recipient.

Where participants have given additional permissions, LSHTM will also transfer the identifying details to the Combined Homelessness and Information Network (CHAIN) database. CHAIN will return de-identified records containing a unique person ID back to LSHTM. CHAIN is a database recording information on characteristics and service use of people sleeping rough and the wider street population in London in order to assess service need, including information such as accommodation status, alcohol, drugs or mental health support needs.

LSHTM will link the HES, CHAIN and cohort questionnaire data using the unique person ID, and thus create a de-identified dataset for analysis. Questionnaire data includes characteristics such as education, ethnicity, homeless category, access of social services, and health status.

The data will be stored on servers at LSHTM.

The data will remain on the servers at LSHTM at all times.

Personnel are not technically capable of downloading or copying data to local devices.

The data will not be transferred to any other location.

The data will not leave England/Wales at any time.

Access is restricted to employees or agents of LSHTM who have authorisation from the Principal Investigator or lead of the quantitative analysis workstream.

Employees or agents of Groundswell, KCL and the study steering committee are only permitted to access anonymised data including information derived from NHS England data. Such datasets will adhere to the relevant suppression rules.

All personnel accessing the data have been appropriately trained in data protection and confidentiality.

The identifying details will be stored in a separate database to the linked dataset used for analysis. All analyses will use the pseudonymised dataset. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset.

Researchers from the LSHTM will analyse the data to compare attendance at outpatient appointments, use of A&E and inpatient stays among people who are homeless using peer advocates and those who do not. This will provide evidence to inform the provision of services for people who are homeless.

The expected outputs of the processing are expected to be:

• A report of findings to NIHR’s Public Health Research Programme at the end of the project

• A minimum of 2 submissions to open-access peer-reviewed journals at the end of the project

• Presentation to Groundswell and other collaborating organisations

• Presentations at Health Security Agency/Inclusion Health Conferences

The outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

The outputs are intended to be communicated to relevant recipients through the following dissemination channels:

• Journals

• Workshops involving people experiencing homelessness to report on preliminary and end of-project findings

• Workshops with policy-makers, clinical and social service providers working with homeless people

• Workshops with specialist services working with peer advocates (Find and Treat, Pathway, Groundswell and other similar organisations seeking to develop such approaches)

• The project specific website (https://www.lshtm.ac.uk/research/centres-projects-groups/hhpa)

• Social media

• Policy briefs

It is anticipated that these outputs will be produced by the end of December 2023.

The research team anticipate the following benefits to health and social care:

1. Commissioning

The research is expected to provide vital UK-specific evidence on how a peer advocacy intervention improves health care utilisation among people who are homeless. By collaborating with Groundswell and people with current or past experience of homelessness and consulting widely with other community stakeholders through the study steering group, the research team aim to ensure that findings are directly relevant to people who are homeless, to service providers, activities and policy makers. Study findings are intended to be used to inform the nature and scope of peer advocacy in the future. Commissioners in the 10 boroughs which fund HHPA services from Groundswell are, in particular, anticipating the findings of this study.

2. Implementation

The findings from this research are also hoped to inform peer advocacy implementation for policies and practices that protect the health and rights of people who are experiencing homelessness. The data provided under this Agreement and the consequent analysis has the potential to provide invaluable lessons to be learned by HHPA services. The study aims to bring benefits to Groundswell in terms of providing important data to inform the implementation of the intervention as well as potentially demonstrating effectiveness and cost-effectiveness.

3. Addressing inequalities in health

Inequalities in health experienced by people who are homeless reflect multiple experiences of exclusion as well as limited access to health care: just 66% of people sleeping rough are registered with a GP. Primary care access is further limited by structural challenges including stigma and difficulties in reconciling the daily demands of being homeless with prioritising care. As a result, people experiencing homelessness have high rates of accident and emergency use (35% in the past year) and hospital admission (26%). Such figures represent potentially avoidable ill-health and distress, but also significant health system costs: the health care costs of homeless people are estimated to be 8 times higher than the general population.

The National Inclusion Health Board which aimed to improve the health of the UK's most marginalised, identified people experiencing homeless as one of four priority groups. By evaluating the effectiveness of the peer advocacy intervention, this research aims to inform the development of a non-NHS intervention that specifically seeks to improve access to services and health of this population. It is hoped to support an emerging evidence base for peer advocacy as a response to homelessness in the UK, and through doing this support the on-going development of Groundswell's HHPA intervention and other interventions using peer advocates.

The use of the data could:

• help the system to better understand the health and care needs of populations.

• lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.

• inform planning health services and programmes, for example to improve equity of access, experience and outcomes.

• inform decisions on how to effectively allocate and evaluate funding according to health needs.

It is hoped that the research will help support services for people who are homeless.

The workshops for people experiencing homelessness are intended to incorporate their feedback and give space to reflect on the interpretation of the findings and implications for practice. The workshops with policy makers, service providers and specialist services are intended as a means to integrate study findings into practice in order to reach a wider audience. The project is overseen by a steering group consisting of academics in the field, non-governmental organisations and health and social care sector. LSHTM will consult with the steering group about further promotion of results.

Yielded Benefits is not a requirement for new applications.