Data process: steps for the implementation of a monitoring system for the elimination of hepatitis in prison
In order to obtain information on viral hepatitis, the best option is to implement a robust prison health information system that also includes data on hepatitis.
This requires the following steps:
- Establishment of a strategy group inside prison
- Definition of standard operating procedures (SOPs)
- Assessment of available data
- Estimate the core indicators along the cascade of care
- Establishment of a database of patients with chronic HBV and HCV infection
- Regularly report the results from the analysis
- Understanding the needs and roles of different stakeholders
- Optimising the flow of data
The establishment of an elimination strategy group in the prison can be a key asset in the collection of data to monitor progress. The group can have a critical role in helping to document the pathway for reporting of data and outlining the roles and responsibilities of different authorities.
SOPs should be defined by the group to ensure that the system operates effectively: they should define what and how often data should be communicated. Once these SOPs have been defined by the group, they should be reviewed at regular intervals e.g. on an annual basis.
It is then necessary to assess what data are currently available and in what format. To that end it is important to consider whether your prison has computerised medical databases or paper records only, consider any routine surveillance data on newly diagnosed hepatitis infections and programmatic data that can provide information relating to burden, prevention, diagnosis and treatment.
The estimation of the core indicators along the cascade of care should be undertaken using data from individual patient monitoring at facility level by extracting data from the prison health information system. If there is no health information system, periodic cross-sectional surveys on the prison population could be undertaken, by using existing tools.
Whichever source that it used, it is important to consider whether the system is based on a snapshot of data collected at a particular point in time or whether data are collated from over a period of time e.g. one year and to ensure there is consistency between numerators and denominators.
Then it is necessary to establish a database of patients with chronic HBV and HCV infection. Setting up a database should be conducted (if resources are available) and this database should ideally be integrated into the broader prison medical database and where possible connected with community information systems.
It is important to add the records of people with newly identified chronic infection to the database. Relevant data on each patient can be collected using a form similar to the WHO template for hepatitis B and C patient management and the record updated when the person is cured of infection (for treated cases of hepatitis C), leaves prison or dies.
The results should be regularly reported from the analysis. Results from across the cascade of care should be reported on a regular (e.g. six monthly or yearly) basis to the elimination strategy group and other key stakeholders.
In establishing a health information system, it is necessary to consider the needs and roles of different stakeholders. A map of relevant stakeholders should be developed. Relevant stakeholders at the prison level include healthcare staff, including all those connected with hepatitis elimination activities, and prison management.
Outside the prison key stakeholders are service commissioners, planners and public health authorities. It is important to note the parameters around who should have access to what data, factoring in confidentiality and personal data protection rules.
For example, staff working in the prison system not connected to healthcare should not routinely have access to confidential medical information regarding diagnosis and treatment. However, at times staff working in the prison may require information on issues such as whether an individual requires transfer to specialist care outside the prison and medical staff may require custodial data such as planned release date to support the provision of medical care.
It is crucial to establish clear boundaries around what information can and should be shared. For further information on key stakeholders, see Section 2: Strategy Development.
Data from the general health information system related to monitoring health services, including hepatitis elimination services, should be collected and collated on a regular basis (e.g. monthly, biannually or annually), as agreed by local stakeholders (link to surveillance system).
From the hepatitis perspective, it is also beneficial if the health information systems cover the following information areas: demographics of the prison population (e.g. age, sex, etc.), health behaviours (e.g. drug and substance use; risk behaviours, etc.), health services and interventions provided (e.g. health screening at entry, OAT, harm reduction services and treatment).
Consider how often stakeholders need to be updated with key data from the system. This will vary according to the stakeholder and the data being shared.
The data format, whether this is a quarterly paper-based report of tables or a monthly electronic summary of the data, should be defined by the stakeholders who need the data. Data based on case finding could be aggregate or case-based as locally agreed; in most instances this can be aggregated totals e.g. numbers tested for hepatitis B/C in the past month.
Finally, optimising the data flow is essential to maximise the use of data. Optimising the flow of data from within the prison setting and to the wider community is important. A local assessment may be helpful to define data pathways (which data go where) and processes (how often the data need to flow and how they flow) of all necessary data pathways.
At the prison level it is important that viral hepatitis data flows to staff involved with healthcare, including all those connected with hepatitis elimination activities, as well as prison management. Outside the prison, data should flow to local service commissioners, planners and public health authorities. Data flow should comply with existing national and regional regulations.
One suggestion for the flow of data from prison information systems to local and national/subnational structures is represented in the following diagram (Figure 7).
sub-national
Health/Justice/Interior
commissioners/health service planners
- Health systems (inputs)
- Health service delivery (outputs)
- Health outcomes (impacts)
Data may also flow from laboratories, as in the community this is often used in addition to clinician-based reporting of newly diagnosed cases of notifiable diseases such as hepatitis. However, in the prison context this relies on laboratory samples being linked to the prison location which may not always be possible or permitted under local data protection principles.
There needs to be consideration of what options are possible to optimise linkage of patient records between the prison and local services outside the prison, including laboratories and hospitals and primary care. This linkage is important given the high turnover of the prison population to ensure continuity of care for when someone enters a prison from the community and for when they leave again.
Further details on methodological approaches for the surveillance of viral hepatitis have been outlined by WHO (WHO, 2024). This guidance includes information on different surveillance approaches and includes information on data analysis as well as template case report forms. The flow of information in relation to routine surveillance of infectious diseases involves timely communications between healthcare and public health authorities (Figure 8).
Patient diagnosed with a reportable condition - viral hepatitis (or is suspected of having a reportable illness on the basis of clinical suspicion e.g. measles)
Healthcare staff enters patient information into health information system
If electronic care reporting system in place - data in system triggers a report that is sent to public health authority.
If no electronic reporting system in place - healthcare staff report case to public health authority
Public health authority receives report and formulates a public health action in collaboration with prison health services e.g. contact tracing
Source: Adapted from CDC.
Iconography by the International Network on Health and Hepatitis in Substance Users, 2024