Our approach to reducing inequalities in screening
To achieve our vision and long-term outcomes we need to address the following five priority areas:
- Communications, engagement, and learning
- Data collection and monitoring
- Research and evaluation
- Overarching issues.
The first four of these priority areas were explored by the subgroups, while the subject of 'overarching issues' was discussed by the reference group. The output of these discussions is captured below.
Issues we have identified we need to address
Communications, engagement, and learning
The subgroup for communications, engagement and learning identified the following four areas as issues in achieving equity.
1. Informed choice
Screening information needs to be available in a suitable format to allow individuals to make a personal informed choice around participation. It should also be easy for individuals to locate. There is also a lack of guidance for carers, the health and social care workforce, and volunteers to support individuals around considering the risks and benefits of screening.
2. Accessible information
In current practice, 'for awareness' and 'invitation to screen' communications are only issued in written English in the first instance to all participants. Any individual who prefers communications in a different language must request information in an alternative format.
Engagement with screening information is also a challenge. A survey from England, for example, found the majority of unscreened individuals in bowel screening had read none of the written information booklet designed to support informed choice. This may in part be due to low health literacy skills of some individuals, which can result in greater challenge for individuals to obtain, process and understand health information.
There is an inconsistent approach to the development of accessible information beyond the 'invitation to screening', with individual NHS Boards developing their own local materials. Furthermore, the process to develop and revise screening information resources can be complex and time consuming.
Another challenge is presented by current IT systems. These do not provide the mechanism to record individual communication needs, or to then issue information in that format for subsequent screening rounds.
3. Engagement and targeting of under-served groups
There can be limited engagement of those with lived experience of screening services to help develop targeted information resources and communication approaches. Also, public campaigns cannot hope to meet the needs of all subpopulations who might benefit from them.
Some people in the eligible age range do not receive an invitation to screen e.g., those experiencing homelessness, those not registered with a GP and some trans individuals. There is an inconsistent approach to follow-up of non-attenders.
Some health professionals have expressed that they are unsure where to access national screening information and communication resources. There is also a lack of available, accessible training for the screening workforce to raise awareness of inequalities in screening and how to address these. Opportunities for shared learning between professionals and organisations working to deliver and support screening are also limited.
To address these issues relating to communication, engagement, and learning, we will:
- Develop a consistent approach to providing accessible information and communication resources across the full screening pathway. To include standardised templates for 'screening results' and 'invitation to diagnostic testing'.
- Explore ways to strengthen our engagement with under-served communities and third sector organisations. This will include building upon existing mechanisms for co-production of information and communications.
- Develop mechanisms within IT systems to capture and respond to an individual's communication needs. We will continue to support the existing programme for 'screening digital modernisation'. This includes the creation of a digital channel to allow participants to interact with screening programmes, e.g., to change appointments and check screening status and results.
- Raise awareness of inequalities in screening amongst the screening workforce, as well as health and social care workforce, third sector organisations and communities. This will include development of accessible learning opportunities, and development of a professional network to share learning and good practice.
Outcome 1a: All eligible people are aware of the relevant national screening programmes, understand the benefits and harms of screening, and can make an informed personal choice with regards to their engagement across the screening pathway.
Outcome 1b: Professionals working to support the national screening programmes are knowledgeable of the inequalities that exist across the screening pathway and use effective interventions to reduce inequalities.
Success in addressing issues around communication, engagement and learning will mean:
Individuals feel they are supported to make a personal informed choice about an initial screening offer, and any subsequent testing or treatment offers
Individuals receive invites to screening and diagnostic testing in a format which meets their needs
Individuals can readily find accessible information throughout the screening pathway
Individuals, communities, and representatives of under-served groups are engaged in the development of screening information and communications
Individuals feel that screening information and communications are appropriately tailored to their needs
Those working to support the national screening programmes are aware of the inequalities in screening and the role they can play to help reduce these.
Access to screening
Access to screening refers to the availability of services, such as the location and time of appointment and the physical environment. These are determined by system resources and structures. Access also encompasses an individuals' ability to reach these services, and the individual barriers they may experience. For example, differences in socioeconomic status may see some individuals living further from services, with a limited ability to spend on travel or take time off work. People in remote and rural areas may also face barriers in distance to services, the means to reach these by limited public transport and limited service days and times. The acceptability of screening tests is another component of access.
The subgroup identified several barriers which create inequalities in access to screening. These are listed below, separated into service level and individual level barriers.
1. Service level barriers
i. Resourcing and capacity
Staff, facilities, and equipment capacity can be problematic. This makes it more challenging to offer longer appointments or appointments outwith standard working hours. Insufficient capacity within the NHS interpreter and translation services is another issue.
There are wide ranging administrative issues. For example, variation in appointment times, duration, and locations, both regionally and locally. There are also limited methods for changing appointments – for example, discussing an appointment over the telephone with a receptionist can be embarrassing for some people, and inconvenient for others.
People not registered on CHI will not receive an invitation to screening, for example, a person born outside of Scotland who has never registered with a GP. Furthermore, people in long-term care or those in prison for less than six months, may not receive their invitation as it may continue to be sent to their home address. People not registered with a GP will receive a screening invitation but may have trouble in accessing cervical screening in a primary care setting.
ii. Staff knowledge and skills
Some health and social care staff lack knowledge of the national screening programmes, eligibility and how to access local screening services. Amongst screening professionals, there can be a lack of understanding of individual level barriers and how to address these and communicate in a supportive way with individuals.
2. Individual level barriers
People may face barriers in accessing services due to a range of factors, including
- Physical disabilities
- Learning disabilities
- Severe mental illness.
Other barriers to accessing screening for some individuals may include
- Language barriers e.g., some people may have limited fluency in English and find participation in screening more difficult
- Emotional barriers e.g., anxiety of the screening process and/or of the screening result, or experience of previous trauma
- Cultural barriers e.g., breast screening may be seen as immodest and dishonourable within some ethnic groups
- Cost related barriers e.g., transport or childcare costs
- Some people may have difficulty taking time off from work or caring commitments
- Some people may have no permanent home
- The location of screening services e.g., distance from home, difficulties with availability of public transport
- For people living in remote and rural areas may have limited or no choice of being seen by an alternative practitioner
- The screening environment may be a barrier for some people e.g., clinical settings, often busy and noisy waiting rooms
- A lack of confidence in healthcare professionals, this may be because of a previous negative experience
- Some people may experience or live with other health conditions.
To address inequities in access to screening, we will:
- Include relevant information in our communications about screening to help facilitate access. For example, we continue to raise awareness of what happens during a screening test to help with anxieties. We will also highlight the availability of NHS translation services in invitations to screening.
- Improve flexibility of screening appointments. We will look for opportunities to offer a greater variety of service provision, for example appointments outwith core hours and in a variety of locations.
- Support people's ability to access screening services. This includes identifying where reasonable adjustments may improve accessibility and responding with appropriate service provision.This goes beyond appropriate service provision which should be available as standard, such as wheelchair use. We will support NHS Boards to offer more specialist services, such as cervical screening clinics for women experiencing sexual violence and trauma, or the provision of hoists for those accessing cervical screening with physical disabilities. We will also signpost screening participants to public transport information or voluntary transport providers.
- Identify and address service level and individual level barriers to help facilitate access to screening. We will develop existing resources to support NHS Boards to conduct equality impact assessments, to help identify and mitigate barriers. We will review the evidence for the acceptability of screening tests and acceptability of pathways, and seek opportunities to improve this, for example self-sampling for cervical screening.
Outcome 2: We have a strategic approach to identifying, addressing, and removing barriers to participants across the screening pathway.
Success in addressing issues related to access to screening will mean:
Individuals are offered greater flexibility for screening programmes, including a wider variety of appointment locations, times, duration, and type to meet their needs, along with different methods to change their screening appointment.
Individuals feel their needs for reasonable adjustments are met, where relevant.
Individuals feel they are supported to address barriers to screening and facilitate access.
Services are designed and planned to meet service users needs, and equality impact assessments are completed.
Data collection and monitoring
The subgroup for data collection and monitoring identified the following areas as issues in achieving equity.
1. Data collection
At a national level, our current data collection of characteristics known to be impacted by inequalities is limited to age, sex (as registered on CHI) and SIMD - a measure of deprivation based on postcode of residence. Beyond uptake of the screening test, the data are often not analysed across the full screening pathway.
2. Data monitoring
The current approach to data monitoring is inconsistent. Some limited inequalities data is included in annual performance reports, but this varies between programmes and is not a focus of reports. The process for discussing data on inequalities lacks clarity and consistency across the screening programmes.
3. Availability of data
Data for inequalities in screening is not easily accessible to those working in screening. There is a lack of knowledge about what is available and where to access it. Where inequalities data is available, it is often limited and not timely.
To address inequities in data collection and monitoring, we will:
- Collect data on a wider range of characteristics associated with inequalities, focussing initially on the relevant protected characteristics, across the full screening pathway. This will begin with capturing ethnicity data. It will also include scoping opportunities to link to other existing data sets.
- Develop a systematic and consistent approach to monitoring data on inequalities across the screening programmes. This will include developing a minimum inequalities data set. Also, an annual report template for each screening programme to analyse patterns and trends around inequalities.
- Explore ways to make inequalities data more accessible to those working in screening. This will include producing communications on data that is timely and readily available. Also, clarifying current arrangements for different organisations to access inequalities data.
Outcome 3: We collect and use data on a wider range of person characteristics to strengthen our understanding of where inequalities exist across the screening pathway.
Success in addressing issues related to data will mean:
We have a greater understanding of where screening inequalities exist, for whom and, at which stages of the screening pathway.
There is a systematic and consistent approach to monitoring inequalities across the screening pathway.
We use data to inform and evaluate our impact on addressing inequalities in screening.
Organisations working to deliver or support screening have access to relevant and timely data to inform their work.
Research and evaluation
Research is vital for ensuring evidence-based recommendations are made to introduce, modify, or cease screening programmes. Evaluation can help determine the effectiveness of an intervention and inform future decisions and actions.
The subgroup for research and evaluation identified the following five areas as issues in achieving equity.
1. Awareness of current research activity
There is a lack of awareness of all current research activity, including formal research*, local NHS Board activity and third sector research and activity. There is a risk of duplication and there are limited mechanisms for shared learning.
* Formal research is conducted using a systematic approach and scientific methods, it requires ethical approval and is typically carried out by or in association with academic institutions.
2. Support for robust evaluation of local projects
There is huge variation in local approaches to evaluation of NHS Board activities. These may sometimes lack robustness and consistency which makes the results and findings more limited for shared learning.
3. Translation of research around inequalities
Currently, there are no mechanisms for screening programmes, at both a national and local level, to consider key results and findings or recommendations from research and to identify ways to incorporate them into standard practice.
4. Imbalance of research
There is an imbalance in screening research with cancer screening programmes receiving more research focus than non-cancer screening programmes. This imbalance is also seen in the focus of the Scottish Government 'screening inequalities fund', which comes from the cancer budget and is therefore only for use in the cancer screening programmes.
5. Inequalities in technical performance of screening technologies
Greater consideration of inequalities should be given to the assessment and implementation of new screening technologies, on the performance for different population groups e.g., sex, ethnicity.
To address inequities in research and evaluation, we will:
- Raise awareness of all current screening inequalities research activity, to avoid duplication and inform learning. This will involve developing mechanisms to capture formal research through the new screening 'Research and Innovation Group'.A new 'Equity in Screening Network' will seek to capture local and third sector research activity.
- Support more robust evaluation of local NHS Board inequalities projects. Working with partners to develop a standard evaluation template, and understand requirements for other resources, to allow all screening inequalities projects to be robustly and consistently evaluated across the country.
- Develop mechanisms to support the translation and application of screening inequalities research recommendations. This will seek to ensure consideration of key research findings and recommendations at a national and local level and provide opportunity to identify ways to incorporate them into standard practice where appropriate.
- Champion opportunities to address the imbalance of inequalities research across non-cancer screening programmes. This will involve highlighting research gaps and priorities to inform researchers, such as through the new screening 'Research and Innovation Group'. We will lobby for funding where additional resource is required, such as to extend the SG 'screening inequalities fund' to include non-cancer screening programmes.
- Review the evidence around technical performance of screening technologies. This should seek to identify potential inequalities for protected characteristic groups, and opportunities to mitigate against any found inequalities.
Outcome 4: We ensure action to reduce inequalities in screening is evidence-based and have a robust and consistent approach to evaluating the impact of interventions.
Success in addressing issues related to research and evaluation will mean:
We continue to build the evidence base of interventions relating to screening inequalities, and disseminate the learning, to guide our evidence-based approaches.
We robustly evaluate the effectiveness of interventions to address screening inequalities across the screening pathway.
We identify research gaps within screening inequalities and share these for consideration by research teams.
We support research activity in both cancer and non-cancer screening programmes.
The reference group also identified several other overarching challenges to tackling inequalities in screening, these are outlined below.
There are no clear structures or process in place to systematically identify, monitor and address inequalities in screening. We will clarify where within the existing governance structures the monitoring and review of inequalities is best managed. This will include a review of the roles and responsibilities of existing governance structures in light of inequalities, such as the Programme Boards or Monitoring and Evaluation Groups.
Across the full screening pathway, certain areas of the workforce face significant pressures around capacity and capability. Capacity shortages may impact accessible screening locations and appointments times, or the turnaround time to provide an individual with an appointment or test result. An example of this is currently seen within breast screening radiographers and radiologists. We will work to understand what workforce constraints, pressures and opportunities exist across the system, and in individual locations and staff groups, and will support current work to address these. For example, workforce is one of the workstreams within the breast screening modernisation programme.
3. Activity to address screening inequalities
There is evidence of marked variation in approaches to addressing inequalities in screening at a local NHS Board level. We will require all NHS Boards to have a 'screening inequalities plan' in place. We will support NHS Boards to develop and review these and provide a space to share their activity and learning.
4. Equality impact assessments
An equality impact assessment (EQIA) is an approach to help determine and understand how what we do may affect people differently. At a national level, there is currently no requirement to review these on a regular basis, but this is an opportunity to improve our practice. We will implement a review process for national EQIAs of each screening programme. Also, any time there is a significant change to a screening programme we will ensure EQIAs are undertaken. We will also strengthen our support to local NHS Boards to undertake and review their own EQIAs. This will involve establishment of a template process for equity audits, and an understanding of any additional resource requirements.
5. Third sector engagement
We recognise and value the in-depth knowledge, expertise, and insight third sector organisations have into screening amongst under-served communities. They are a key partner in the design and delivery of services to help reduce inequalities in screening. The opportunity to engage and collaborate with third sector organisations on screening is inconsistent at present across NHS boards. We will undertake a review of existing engagement arrangements and identify ways to build upon these, for example, through the new 'Equity in Screening Network' or an annual stakeholder event.
6. More radical change
We have been working to tackle inequalities in screening for some time, however our impact at a national level has been limited. We want to create an environment where radical change, which recognises the scale of the challenge, is both possible and encouraged. We will work to identify potential radical or innovative inequalities interventions and test a small number of these initially. For example, prioritising people from a protected characteristic group within the screening pathway.
7. Future screening programmes
It is both possible and likely that the UK NSC will recommend new national screening programmes in the future. We will ensure that consideration and mitigation of inequalities is embedded as a priority early in the planning stage of any future screening programme pathways. This will include those for the recent UK NSC recommendation to introduce a national lung cancer screening programme for example.
8. Wider system challenges
Both our society and our healthcare service continue to face unprecedented challenges. For example, pressures on the NHS and the cost of living crisis. Addressing these challenges are outwith the scope of the strategy; however, they are likely to exacerbate health inequalities in general whilst impacting our ability to effectively tackle inequalities in screening.
Furthermore, many of the barriers and facilitators to screening also exist in other healthcare services and require action. Each national screening programme is currently delivered independently of any other screening programme or health and care services. We will work towards better 'joined-up care' for individuals, to reduce common barriers in access. This will involve scoping how different health, care and other services can be brought together to reduce barriers and provide greater opportunities to meet the needs of under-served groups.
Addressing the fundamental causes of inequality and inequity is outwith the scope of the strategy, and significant change will rely upon stronger policies and implementation at all levels.
We will use the strategy to help draw attention to the issues and support the case for wider system level change.
Outcome 5: We have a whole system approach to tackling inequalities in screening. Reducing inequalities is recognised by all as a priority and is supported by the screening governance groups and the commitment of all partners.
Success in addressing 'overarching issues' will mean:
We have a systematic approach to monitoring inequalities in screening, and routinely discuss where progress has been made and any gaps need to be addressed.
We have an understanding of workforce constraints, pressures and opportunities and we support work to address these.
We consider people's needs in accessing screening by ensuring good practice for conducting equality impact assessments, and we regularly review these at a national level.
Inequalities in screening are a priority for all NHS Boards, with maintained effort to addressed these through clear planning and evaluation, and learning is routinely shared.
We work collaboratively as a screening system and have strong mechanisms for engagement with a wide range of partners, including third sector organisations and communities.
We are ambitious in our approach and embrace opportunities for radical change.
We work with the wider system to champion the issue of inequalities and support change in this area.
How we will deliver the strategy
Delivering and overseeing the strategy
The National Screening Oversight Board (NSOB) will be responsible for overseeing the implementation and delivery of the strategy and action plan. An 'Equity Strategy Implementation Group' will provide the NSOB with detailed assurance of progress. Different organisations will take the lead on delivering aspects of the strategy, and the action plan provides further detail on this (appendix 1).
Resourcing the strategy
All NHS Boards already have a responsibility to address inequalities, including those in screening, and so it is expected that many of the actions required to deliver upon this strategy can be supported by existing resources (including through reprioritisation where necessary). Re-current annual funding from Scottish Government also supports national and local intervention to address inequalities specifically in the cancer screening programmes. However, there may also be a need for additional investment to support new work or system-level developments at national and local levels. Where this is the case business cases will be developed to demonstrate the value of such investment.
Measuring our impact
It is important that we understand the impact the strategy has on reducing inequalities in the national screening programmes. To do this, we must first prioritise to improve our collection of screening inequalities data. In the meantime, we will evaluate short-term outcomes of the strategy.
NSO will engage Public Health Scotland and other stakeholders to identify how change can be measured to understand our impact towards achieving our long-term outcomes and vision.
NSO will ensure regular monitoring and review is built into the action plan. Reports on progress will be produced and shared through established governance channels, such as the National Screening Oversight Board and Programme Boards.
NSO will review the strategy and action plan within 3 years. This will allow for changes to be reflected in our understanding of inequalities in screening from new data and evidence, also from shared learning. Where relevant, to also consider new developments in any of the national screening programmes.
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