Research and analysis

Evaluation of the hepatitis C: patient re-engagement exercise

Updated 6 January 2025

Applies to England

The original hepatitis C: patient re-engagement exercise was started by Public Health England (PHE). It was then finished by UK Health Security Agency (UKHSA). This is why the original materials carry the PHE brand, but the evaluation refers to UKHSA.

Executive summary

Background

To enable people previously diagnosed with hepatitis C virus (HCV) to be treated for their infection, NHS England (NHSE) and UK Health Security Agency (UKHSA) organised a national patient re-engagement exercise. The aim of the exercise was to offer testing and treat people with a HCV infection, many of whom may have been lost to follow-up after being diagnosed at a time when knowledge of HCV-related liver disease was limited, and treatment options and outcomes were suboptimal.

The NHSE Operational Delivery Networks (ODNs) are responsible for HCV care in England. Using laboratory surveillance data from UKHSA covering the time period of 1996 through 2017, ODNs began delivering the re-engagement exercise from 2018. A baseline assessment of capacity and intent of ODNs was undertaken by UKHSA in 2018 to 2019 to identify needs and issues which could be addressed ahead of implementation.

This report summarises the post-implementation evaluations of the exercise conducted by the National Institute for Health Research (NIHR) Health Protection Research Unit on Blood Borne and Sexually Transmitted Infections (BBSTI), a partnership between University College London (UCL) and UKHSA. First, we summarise the published quantitative evaluation, which includes outcome and process data returned by ODNs to UKHSA up to 2022. Then we summarise the qualitative evaluation which draws on interviews with ODN staff, conducted in 2023 to 2024.

Methodology

Quantitative process and outcome evaluation

Descriptive analysis and assessment of outcomes reported by ODNs to UKHSA or obtained through linkage to established healthcare datasets (treatment prescription data, mortality, liver transplants). Process indicators include whether contact was made and the reasons why contact was not made, with the individuals from the surveillance data. Outcome indicators include treatment uptake, and reasons for non-treatment (ribonucleic acid (RNA) negative, previous treatment, or death).

Qualitative process evaluation

21 semi-structured interviews with NHS staff took place in ODNs. Using the Theoretical Domains Framework (TDF) and a thematic analysis, we identified barriers and facilitators to the re-engagement exercise.

Summary of main research findings

Quantitative

Of the 79,400 laboratory records of HCV diagnoses from 1996 through 2017 linked by UKHSA, 23,370 were alive and already engaged in care and were therefore excluded, leaving 55,329 individuals whose information was shared with the ODNs for re-engagement.

After the re-engagement exercise commenced, 18,072 (32.6%) individuals had evidence of treatment or clearance of RNA. This includes:

• 7,442 (13.4%) had evidence of treatment after the re-engagement exercise commenced
• 6,435 (11.6%) were reported as RNA negative (96% of whom had no previous treatment records, likely representing spontaneous clearance)
• 4,195 (7.6%) had prescription data indicating treatment before the exercise commenced or were reported to have been treated previously by their ODN

Further 2,990 (5.4%) had died and the status of 32,802 (59.3%) people remained unknown as of August 2022. The remaining individuals were:

• transferred to another ODN
• awaiting bloodwork
• required follow-up
• declined to engage
• had a clinician decision not to treat

Overall, of those eligible for treatment, 18.24% were re-engaged in care.

Qualitative

The re-engagement exercise was reported by interviewees (ODN staff) to have had the positive effect of facilitating more organised methods for using public health data, linked to a clear mandate to re-engage people with HCV infection into a care pathway. Additional facilitators included the use of local resources and engagement strategies, and the way the exercise enabled the ODNs to fulfil their targets and remit of finding and treating patients.

The main barrier reported was the administrative burden of the exercise, given the need to manage testing and treatment across a vast region, with manual linking and checking of testing and treatment data from other services. ODNs also faced difficulty in contacting patients who changed address or phone number, or who did not respond to contact attempts. Finally, interviewees emphasised the need for resourcing and expertise for ongoing localised outreach and peer support approaches for supporting the remaining individuals who are not yet re-engaged in care.

Background to the evaluation

England has a population of people living with a HCV infection who have been lost to follow up, including those infected before the advent of Direct Acting Antivirals (DAAs), which are a curative treatment. The World Health Organization’s Global Health Sector Strategy includes the elimination of HCV as a public health threat by 2030. As stated in UKHSA’s Hepatitis C in England 2023 report, supporting individuals that have been lost to follow up to re-engage with care is an integral part of achieving elimination.

This report summarises the post-implementation evaluation of a joint initiative between NHSE and UKHSA called the Hepatitis C: patient re-engagement exercise.

In the re-engagement exercise, UKHSA shared routine laboratory surveillance data with the 22 NHS ODNs who are responsible for HCV treatment and care in England. The surveillance data contained lists of people with a historical diagnosis of HCV (HCV antibody and/or HCV RNA test result) who had no nationally recorded treatment outcome or subsequent negative HCV RNA test result. The aim of the exercise was for ODNs to, as far as possible, re-engage these individuals into care by inviting them for confirmatory testing, and if found to be HCV RNA positive, offer them curative treatment.

The evaluation used process and outcome data returned by ODNs to UKHSA, and interviews with NHSE staff at ODNs. The quantitative evaluation has been published in a peer-reviewed journal. This report summarises the quantitative and qualitative evaluations and underscores the importance of further evidence, evaluation, and intervention required to re-engage those who may still have an active infection with HCV.

Methodology

Background on routine laboratory reports

HCV diagnoses were obtained from routine laboratory reports, defined as the detection of HCV antibody or HCV RNA in blood submitted by English virology laboratories to UKHSA. The laboratory surveillance system does not distinguish between HCV antibody or HCV RNA positive individuals, so laboratory ‘confirmed’ cases are a mix of current and ever infected individuals. Laboratory HCV reports have been submitted to UKHSA (and its predecessor organisations) through paper forms or electronically since 1990, but laboratory reporting of notifiable organisms became mandatory in 2010. Reports include basic demographics (name, date of birth, sex and NHS number).

Re-engagement exercise

Routine laboratory reports from between 1996 and 2017 (inclusive) were cleaned, reconciled, and linked to generate the patient lists for ODNs. This included linkage to the NHS personal demographics service (a national master database of all NHS patients in England, Wales and the Isle of Man, which holds basic patient demographic details such as NHS number, address, registered general practitioner (GP) and date of death), Office for National Statistics (ONS) death registrations, the HCV patient registry and treatment outcome database, and the transplant register. Final lists included individuals known to be alive who had no record of treatment or of a negative HCV RNA test. Individuals without minimal identifiable data (names, date of birth, sex and NHS number) or no registered GP, were excluded. These lists were distributed to each ODN.

ODNs undertook further checks against their local databases and systems to verify HCV status and contact details. They were advised to contact the patients registered GP and then patients directly to offer HCV testing, and treatment for those identified as HCV RNA positive. Guidance was provided to ODNs and GPs, with a suggested process and timeline, and patient leaflets and letter templates were co-produced by UKHSA with the Hepatitis C Trust and NHSE. The guidance acknowledged that local adaptions would be needed and that additional local resources could be employed.

Quantitative evaluation

Outcome and process indicator data spreadsheets were returned by the ODNs to UKHSA. Outcomes were treatment uptake, and reasons for non-treatment (HCV RNA negative, previous treatment, or death), and processes included whether contact was attempted or not. UKHSA also relinked individuals to the NHSE HCV patient registry and treatment outcome database to determine people who had received treatment, and ONS death registrations to determine any individuals who had subsequently died.

Qualitative evaluation

Semi-structured interviews were chosen as they allow for in-depth exploration of topics and flexibility to explore interviewees’ (ODN staff) responses. A topic guide was developed using the TDF, which integrates constructs from across behavioural science to identify barriers and facilitators relating to interviewees’ capabilities, opportunities, and motivations to conduct the re-engagement exercise.

Sample

Quantitative

Of 176,555 individuals with a positive HCV laboratory report, 55,329 individuals were shared with ODNs following record linkage, data cleaning and reconciliation conducted by UKHSA. All 22 ODNs started the re-engagement exercise, 11 ODNs returned process and outcome data to UKHSA by 2022.

Qualitative

The interview sample frame aimed to vary participants from ODNs that did and did not return data, that achieved different yields from the exercise, and from across all regions of England. Recruitment involved a study invitation circulated via senior NHS ODN clinical leads and the ODN newsletter. ODNs selected in the sampling frame were then emailed by the research team. Additional emails were circulated via the UKHSA regional facilitators for bloodborne viruses (BBVs) and contacts of the NIHR Health Protection Research Unit (HPRU) for BBSTI.

Ethics

UKHSA has approval to handle public health surveillance data under Regulation 3 of the Health Service (Control of Patient Information) Regulations 2002. Sharing of historic laboratory surveillance data with ODNs was approved by the UKHSA Caldicott panel.

ODNs signed a Memorandum of Understanding on their responsibilities to use this data to re-engage patients in their region.

The UKHSA Research Ethics and Governance Group (ID 554) approved the qualitative evaluation. Participants were informed that participation was voluntary, that transcripts would be anonymised, and that they were free to withdraw from the study. Colleagues and line managers were not informed of ODN staff members’ decisions to take part or not. All participants received an information sheet and signed an electronic consent form.

Analysis

Quantitative

Descriptive analysis and assessment of process indicators and outcomes reported by ODNs.

Qualitative

Thematic analysis was guided by a codebook designed using the TDF, which is an integrated approach to identifying the barriers and facilitators to an implemented programme, such as the re-engagement exercise.

Quantitative findings

The full analyses are reported in the quantitative evaluation publication.

Table 1 describes the demographic characteristics of those individuals included in the re-engagement exercise:

• 36,779 (65.5%) were males
• the median age was aged 51 years (interquartile range: aged 43 years, aged 59 years) at the time of analysis in 2023
• 47,668 (86.2%) were diagnosed before 2016
• 11,148 (20.2%) were resident in London

Tables 1a to 1d. Demographic characteristics of the individuals included in the re-engagement exercise (that is, individuals shared with the ODNs)

Table 1a. Sex

Sex	Total
Female	18,550 (33.5%)
Male	36,779 (66.5%)
Total number of individuals	55,329

Table 1b. Age

Age	Total
25 years and under	835 (1.5%)
25 to 34 years	2,096 (3.8%)
35 to 44 years	12,638 (22.8%)
45 to 54 years	17,861 (32.3%)
55 to 64 years	14,000 (25.3%)
65 years and older	7,899 (14.3%)
Total number of individuals	55,329

Table 1c. Year of diagnosis

Year of diagnosis	Total
1993 to 2000	2,926 (5.3%)
2001 to 2005	8,230 (14.9%)
2006 to 2010	15,531 (28.1%)
2011 to 2015	20,981 (37.9%)
2016 to 2017	7,656 (13.8%)
missing	5 (0.01%)
Total number of individuals	55,329

Table 1d. Region of residence

Region of residence	Total
North West	10,796 (19.5%)
North East	9,319 (16.8%)
Midlands and East	11,784 (21.3%)
London	11,148 (20.2%)
South West	4,912 (8.9%)
South East	7,370 (13.3%)
Total number of individuals	55,329

Process indicators

Of 25,813 individuals from ODNs that returned data, 9,197 (35.6%) had process indicators reported in their record, of whom 4,750 (51.6%) were contacted by their ODN.

Of those contacted, initial investigations excluded 163 individuals who had died and 17 children, 2,317 (48.8%) responded, 2,215 (46.6%) did not respond (115 letters returned to the ODN) and 38 (0.8%) could not be further engaged for multiple reasons.

Of the 4,447 with process indicators who had not been contacted, reasons for no contact included:

• known to be HCV polymerase chain reaction (PCR) negative (1,612, 36.2%)
• receipt of treatment before the exercise (264, 5.9%)
• known to ODN but no evidence of treatment (413, 9.3%)
• known to ODN and treated (377, 8.5%)
• transferred care (167, 3.8%)
• awaiting results (4, less than 0.1%)
• GP indicated inappropriate to contact (12, 0.3%)
• emigrated (3, less than 0.1%)

A further 108 (2.4%) individuals had not been contacted, as the ODN was still awaiting a GP response. Finally, 1,387 individuals could not be contacted by the ODN either because ODNs did not have up to date contact details (513, 11.5%), or they remained unknown to the ODN (no record found) and were therefore considered to be not engaged with services (874, 19.6%).

Outcomes

As of August 2022, of the 55,329 individuals shared with ODNs:

• 7,442 (13.4%) had accessed treatment since the re-engagement exercise commenced
• 2,990 (5.4%) were found to have died
• 6,435 (11.6%) were reported as HCV PCR negative (96% of whom had no previous treatment records)
• 4,195 (7.6%) had prescription data indicating treatment before the exercise commenced or were reported as previously treated by their ODN
• 411 (0.7%) declined to engage
• 276 (0.5%) had not yet attended a planned ODN appointment
• 167 (0.3%) were reported to have transferred their treatment elsewhere
• 35 (0.1%) were awaiting blood test results
• 12 (less than 0.1%) had emigrated
• 9 (less than 0.1%) were inappropriate to contact and 8 (less than 0.1%) had a liver related event
• 32,802 (59.3%) had an unknown status

The main findings and the implications of these findings are discussed in the following.

Findings

1. As of August 2022, 13% of those included in the exercise accessed treatment after the exercise commenced

This figure changes to 18% if you exclude people who were not eligible for treatment (for example, because they had a negative RNA test).

Implications

The number of individuals treated suggests that using national surveillance data as the basis for patient re-engagement exercises has utility but requires further investigation, particularly to refine the dataset to allow a more targeted approach of those with untreated active infection that might be more effective with key populations. 

2. 12% of those included in the exercise were found to be HCV RNA negative either through follow-up testing or through ODN records

96% of those found to be HCV RNA negative had no previous treatment records.

Implications

Given the mix of HCV antibody and HCV RNA tests in the laboratory surveillance dataset, the study included some individuals without an active infection. This could reflect several mechanisms including spontaneous clearance of infection, treatment outside the NHS (privately or outside England), previous false positives, or failure to record treatment.

3. 5% of those included in the exercise had died

Of 2,990 individuals who had died, 2,104 (70.4%) were males and median age at death was aged 54 years (Interquartile Range: aged 46 years, aged 63 years). The underlying cause was missing for 515 (17.2%) deaths. The leading single underlying cause of death, where available, was hepatocellular carcinoma (HCC) accounting for 183 (7.4%) of deaths with a reported underlying cause, liver disease accounted for 300 (12.1%), and viral hepatitis for 88 (3.6%) of deaths. There were 571 (19.1%) reported liver related deaths, with HCV indicated as a contributory cause for 271 out of 571 (47.5%). HCV was a contributory factor for 457 (15.3%) of all deaths while HCC and end-stage liver disease were contributory factors for 222 (7.4%) and 227 (7.6%) of deaths respectively.

Implications

The advent of DAAs has rendered HCV a curable disease in most cases, so these deaths might have been avoided with earlier engagement in care. These findings illustrate the importance of the test and treat models (which aim to offer treatment as soon as ongoing infection is confirmed through a PCR test), and ongoing work by NHSE to simplify the care pathway to ensure that people testing positive for HCV RNA have quick and easy access to treatment.

4. 59% of those included in the exercise were not re-engaged

Implications

The proportion of HCV positive people successfully re-engaged varied by ODN, and likely resulted from implementation and individual-level challenges which require further investigation and evaluation.

Implementation challenges that impacted the exercise and the evaluation include varying ODN engagement, with 11 of the 22 ODNs not reporting data, thus limiting our ability to fully evaluate the exercise. Secondly, there was significant variation in the implementation approaches used by ODNs, as indicated by the data returned to UKHSA. Thirdly, due to varying data completeness, some individuals could not be found in any of the records that ODNs cross-checked or could not be contacted due to lack of up-to-date contact details.

Individual barriers to re-engagement in care could include internal, person-specific mechanisms, such as stigma, access to treatment, and belonging to inclusion health groups that face difficulty gaining access to healthcare or have other competing priorities, such as people who inject drugs, people living in prisons, and people experiencing homelessness.

Both implementation challenges and individual level barriers were investigated further in the qualitative phase of the evaluation, and an additional patient interview study currently in progress will be able to elaborate on patients’ perspectives on the individual barriers to re-engagement.

Qualitative findings

Participants

21 individual staff at 13 ODNs were interviewed, these included:

• 4 participants from London
• 4 from the Midlands and the East of England
• 9 from the North of England
• 4 from the South of England
• 13 participants from 6 ODNs that had not returned data to UKHSA

Findings

1. The re-engagement exercise enabled novel and more organised ways of re-engaging people lost to follow up

Interviewees had different views on whether they achieved a good treatment yield from the re-engagement exercise, however, most felt that the exercise was worthwhile because it enabled them to either:

• engage with some patients they did not know were in their area and who had not been engaged in other services
• find patients sooner than they would have otherwise and treating them before they progressed with liver disease
• clean up databases, such as by resolving false positives and confirming HCV RNA negative results
• maintain lost to follow up lists and continue sharing public health data between ODNs and UKHSA

It was an incredibly positive piece of work that removed barriers to us within our Operational Delivery Network. And those patients [that we found], I suspect eventually would have been treated, but where they would have been up to in their disease progression may have been far worse than what they are now…Even the negative, the negative results that we got from all of this have been a massive impact in trying to focus where we deliver care, to focus where we test and treat.

(Participant 13)

However, the yield did not meet the expectations of some interviewees who did not feel that the exercise helped them find new people to treat. These interviewees said they either already knew about the patients in their area or that they were finding other methods for re-engaging patients to be more effective (other re-engagement strategies are discussed in Finding 5).

Implications

The re-engagement exercise did reduce barriers to the use of public health data to re-engage people lost to follow up. The exercise has in part helped focus further re-engagement strategies, even where yield was not high from the exercise.

2. The re-engagement exercise created new opportunities for ODNs that required administrative resource

The novelty of this exercise was that ODNs received historical laboratory records pertaining to individuals not known to the ODN previously, however some records were false positives and incomplete or incorrect (legacy) records. While this created opportunities for some ODNs to meet treatment targets and move towards elimination in their area, it also came with a high administrative burden that needed additional resource.

For example, new referral processes and laboratory data sharing agreements needed to be set up, logistical challenges arose in arranging testing and treatment across the ODNs’ regional centres, and nursing staff at different sites had to work with unfamiliar data processes. Each ODN hub or NHS Trust had different requirements that needed local resources to resolve. Concerted efforts were made by dedicated staff to overcome these hurdles, but some expressed disagreement about whether the exercise had been distributed appropriately or resourced sufficiently.

I think initially, and if [sifting through the lab data] could have been done, you know up front, whether that’s with the labs like you [UKHSA] speaking directly with the labs or whether there’s the information centrally [at] UKHSA, whether that was available or whatever linking to some of those other sentinel pieces. I think maybe that could have been really beneficial because we wouldn’t have had such a huge list that we then have to whittle down. We could have just kind of focused straight away on the patients that we kind of knew: either we had to check whether they been treated or you know what because we had no other follow up results anywhere.

(Participant 1)

Implications

The exercise contributed to the evolution of ODNs’ roles in public health screening and case finding. ODNs found it difficult to standardise an approach and dedicated resources were needed. Going forward, ODNs would value evaluation evidence and further funding and national mandating of action on approaches to finding people unknown to services who may be living with HCV, compared to focusing on re-engaging patients who are confirmed to be living with HCV.

3. It was difficult to make contact with people with historical diagnoses, but most people were happy once contacted

The main difficulty reported by ODNs about patient communication was a lack of response. Typically, letters were posted using the templates provided in the guidance. Additional processes were added by some ODNs such as phone calls or multiple letters sent at different times, with varying results. Interviewees said they were unsure if they had failed to contact those individuals or if those individuals were refusing treatment.

On a more positive note, most people from whom the ODNs did receive a response were quite happy to have been contacted, even if they had already been treated or received an HCV RNA negative result in another service. Unfortunately, as anticipated in the design of the exercise, a small number of people were unhappy about being contacted about their historical diagnoses. Incidents included accidental disclosure of Hepatitis C status to another member of the household, ODNs unknowingly using out of date addresses or phone numbers, and reports of reinvoking distress for patients who had thought their infection was resolved.

Some people will be worried about [the letter]. ‘Just let’s ignore it’. Will be some people that panic and are on the phone straight away. ‘I need to have the test as quick as possible’. A lot of it, the letters or whatever communication will not get to the person because it’s incorrect. That the last known address or whatever, because even using - we always use Summary Care Record which is theoretically got the latest information on it for GP location or address. But so often that’s out of date because this group do move around a lot. So I would say at least half the attempts to contact the people probably never got to the individual, which is a big factor in all of this.

(Participant 23)

Interviewees reported additional support mechanisms added to reduce patient distress, including carefully considering what language to use in the initial communications, timing their letter mailouts so that patients could receive timely advice and a short wait for treatment, and direct phonelines to the clinical nursing specialists.

Implications

Most interviewees felt that their responsibility as an ODN is to notify individuals of a cure for their possible infection, and that this outweighs the risks of causing them distress. However, some ODNs and NHS Trust governance varied in their stance on these risks. Moreover, improved tools are needed for communicating with the correct individuals, and these need further evidence and evaluation.

4. The role of primary care in Hepatitis C re-engagement cannot be overlooked

ODNs were instructed to notify GPs of the exercise in case they had information about the patient that meant they were not suitable for re-engagement at that time. However, on the advice of the GP committee (GPC), because GPs are overburdened with competing priorities, ODNs were also instructed to proceed without a response, having given the GP sufficient time to respond.

Interviewees reported that most GPs did not object to the exercise, and that they received few responses from GPs. However, some ODNs had pre-established links with a small number of GPs, and these GPs were able to further support the exercise. For example, some arranged HCV RNA testing in their practice whereas others referred their patients on to the ODN. Further, some ODNs who could not reach the patients then went back to the GPs to flag them as having a potential HCV infection for follow up later. Such support, when it did happen, enabled more flexible and local testing to meet patient needs.

…certain GPs were far more responsive than others, and so we’ve worked with, you know, particularly one in [place omitted] where we’ve worked with quite regularly for a number of years and were very good at getting back and supporting us. Others where we would send an email, send a letter out to them with the patient details, we wouldn’t necessarily hear anything from that GP.

(Participant 8)

While GPs active involvement was not necessary, interviewees felt that their involvement may have made the exercise more effective, especially for diagnoses originally made in primary care (which make up the largest proportion of diagnoses in laboratory surveillance data).

Implications

Closer integration of primary care could result in better re-engagement outcomes, however, currently any integrated working relies on prior individual ODN-GP relationships and additional funding. An additional constraint is the lack of up-to-date GP registration data, as patients move away without notifying their GP. In the lead up to elimination of HCV it is important to include all care domains in re-engaging patients. UKHSA is conducting further interviews with GPs to understand the barriers and facilitators to HCV re-engagement in primary care.

5. Additional local resources and engagement strategies are helping ODNs to re-engage patients

Interviewees were asked about other ways they are re-engaging patients since the re-engagement exercise. They mainly reported on partnerships with other services, community groups and charities, and localised outreach approaches. The localised outreach approaches included the ODNs using testing vans that provide services in local HCV hotspots or employing lived experience peers and volunteers (from the Hepatitis C Trust) that visit people at home and attend appointments with patients. Interviewees elaborated that they are finding success in going to where people are rather than asking patients to travel to a hospital, and that persevering in periodically re-contacting people who have previously declined treatment is eventually successful in most cases.

Additionally, some interviewees suggested they are having some success in re-engaging people when they are accessing other services (such as emergency departments or drug treatment services) as they can quickly speak to them in person rather than try to reach them on the phone or by post. The involvement of primary care is also being pursued by forming closer links between ODNs and GPs, helped by funding for a GP champion initiative from NHSE.

Finally, additional technology led solutions are seen as likely to fill in some gaps in testing and meeting patient needs, such as the online web testing portal, the use of automated SMS linking people to that portal, and mobile real-time testing machines.

When we started the [re-engagement] programming, patients, you know, had to come and see us and now for some patients, we’re actually going to their doors and providing treatment on site. So, you know it’s a learning curve in that regard.

(Participant 12)

Implications

As services continue to evolve these multi-method approaches to re-engaging patients, it is important to collect data to evaluate their effectiveness. Linking services and sharing data between services is important in re-engagement so that more effective, holistic solutions can be tailored to meet the needs of patients from different populations.

6. Patterns of barriers and facilitators by ODN yields

Finally, we examined the barriers and facilitators reported by ODNs who achieved different levels of treatment yield (% of individuals from their lists treated since the re-engagement exercise). We observed that ODNs with lower yields more often reported disruption due to the COVID-19 pandemic as they started the exercise later than other ODNs. The ODNs who had higher yields also reported availability of additional hospital data analyst or administrative support, capacity for treatment at the time, and that the re-engagement exercise enabled them to meet their current targets.

Implications

Due to limitations in the evaluation methodology, we are unable to directly relate the pattern of barriers and facilitators reported in the qualitative interviews with the quantitative outcomes. However, differences in yield may have related to environmental, timing, and capacity factors that could be overcome in the future.

Limitations of the evaluation

There was varying engagement from ODNs with UKHSA after commencing the re-engagement exercise. As such, the evaluation analyses were restricted by the amount and quality of data returned by ODNs and not all ODNs are represented in the evaluation. Further, the COVID-19 pandemic caused significant disruptions to the exercise (13 interviewees said the pandemic caused them to halt the exercise and that they could only focus on getting current patients through treatment). They also said that once pandemic restrictions were lifted it was difficult to resume the exercise due to shifting priorities from NHSE and staffing changes. Evaluation of the exercise occurred five years after lists were first made available to ODNs, during which time changes in clinical practice, funding, and other external factors have taken place. Further, recall issues were evident in the interviews.

General conclusions

The re-engagement exercise resulted in 7,442 (13% rising to 18% when we exclude previously treated, PCR negative and those who died) individuals who were previously not engaged in care being prescribed HCV treatment. These individuals are estimated to represent 1 in 10 of the total number of individuals treated in England since 2015. We also found that 2,990 (5%) individuals had died, of whom 15% had HCC and/or early stage liver disease recorded as a contributing factor on their death certificate.

Overall the exercise was unable to directly re-engage 59% of individuals shared with ODNs who are thought to be alive, who may potentially still need treatment or may be HCV RNA negative. Ascertaining which of these individuals remain infected with HCV is important for estimating the proportion of people diagnosed with HCV in England, and for planning how best to re-engage them into care. Additionally, the individuals who were screened out early on in the re-engagement exercise, for example due to not having a registered GP, may need to be reconsidered. In some instances, despite positive re-engagement, some individuals refused treatment. It is important that these individuals have continuing support and access to treatment should they change their mind.

The re-engagement exercise was restricted by historical laboratory data that was often recorded before RNA testing was standard practice. A further need is for better recording of HCV RNA tests in laboratory records, including negative results. Whilst hepatitis C is a notifiable disease, the mechanisms for reporting all hepatitis markers between the laboratory and UKHSA for surveillance purposes has limitations, with only one marker, usually the antibody result being reported at one time.

The barriers ODNs encountered in the exercise made it challenging to successfully re-engage people at the time. However, interviewees reported that, since the re-engagement exercise, some of these barriers have been reduced. For example, improvements in data access and sharing, and better hospital and laboratory record systems. UKHSA has been conducting further data sharing exercises with ODNs, including the paediatric ODN, to continue to cross-check records to find up to date results or whether individuals have been treated in a different ODN. There is now also a UKHSA HCV dashboard that ODNs can use to identify HCV hotspots and where people are being lost to follow up in the care pathway.

Given these improvements since the re-engagement exercise, if similar exercises were undertaken in a tailored manner, working in partnership with local trusts, primary care teams, and NHSE, it may be possible to ascertain the status of many of the remaining individuals.

ODNs have also developed a broader repertoire of ways of reaching and communicating with people, including holistic integrated care and community outreach approaches. Continued evaluation and funding of these approaches is important.

The UKHSA Hepatitis C in England 2023 report makes further recommendations for the interventions and evaluations needed to achieve elimination in England.

Following this report will be further reports on the barriers and facilitators to re-engaging with care from a patient perspective and on barriers and facilitators to involving primary care in re-engagement activities.

Acknowledgements

Thank you to all the NHSE ODNs for conducting the re-engagement exercise and facilitating the evaluation.

Exercise design, implementation, and report contributors (in alphabetical order):

UCL: David Etoori, Fabiana Lorencatto, William Rosenberg, Caroline Sabin.

UKHSA: Monica Desai, Helen Harris, Carina Hoerst, Georgina Ireland, Catherine Lowndes, Sema Mandal, Mary Ramsay, Ruth Simmons, Avelie Stuart.

We acknowledge the support of NHSE: Richard Aspinall, Beatrice Emmanouil, Graham R Foster, Mark Gillyon-Powell.

We acknowledge members of the NIHR HPRU in BBSTI Steering Committee: Professor Caroline Sabin (HPRU Director), Dr John Saunders (UKHSA Lead), Professor Catherine Mercer, Professor Gwenda Hughes, Dr Hamish Mohammed, Professor Greta Rait, Dr Ruth Simmons, Professor William Rosenberg, Dr Tamyo Mbisa, Professor Rosalind Raine, Dr Sema Mandal, Dr Rosamund Yu, Dr Samreen Ijaz, Dr Fabiana Lorencatto, Dr Rachel Hunter, Dr Kirsty Foster and Dr Mamooma Tahir.

Suggested report citation: Avelie Stuart, David Etoori, Carina Hoerst, Catherine Lowndes, William Rosenburg, Fabiana Lorencatto, Simon Packer, Ruth Simmons, Monica Desai, Sema Mandal, Mary Ramsay. Evaluation of the Hepatitis C: patient re-engagement exercise. November 2024, UK Health Security Agency, London.

Funding

The research is funded through the NIHR HPRU BBSTI at UCL in partnership with UKHSA.