Sickle cell and thalassaemia screening: community outreach good practice
Advice for people who commission, fund, deliver and evaluate health outreach programmes.
Introduction
This guidance is to help develop, implement and evaluate an outreach programme addressing health issues and is for people commissioning, funding, delivering and evaluating outreach work in both the NHS and the voluntary sector.
Communications consultant, Liz Aram, introduces the guidance, which draws from more than 8 years of outreach work conducted by the NHS Sickle Cell and Thalassaemia Screening Programme.
Community outreach: good practice guidance for health programmes
The guidance includes:
- a case study about the work by the screening programme
- guidance for people commissioning, funding, delivering and evaluating outreach work in both the NHS and the voluntary sector, grouped by:
- community outreach planning
- outreach implementation
- outreach evaluation
The guidance outlines what we’ve learned as a series of practical tips drawn from NHS work, and from other successful outreach projects from the voluntary sector.
Watch a short video introduction of the innovative outreach and education programme run by NHS Sickle Cell and Thalassaemia Screening Programme, that includes:
- why the NHS started outreach
- main activities including creating a drama on DVD shown with facilitated question and answer sessions, community education and discussion sessions, media work and attendance at community events and settings
- evaluation data
- testimonies from voluntary sector partners, and people living with the condition, carers and members of the public
The resource includes video interviews with service users, the voluntary sector, clinicians, and members of the screening team.
Planning community health goals: realistic and measurable
Be clear and realistic about what you can achieve
What are you seeking to achieve:
- behaviour change?
- attitude change or increased knowledge?
- more people accessing a service?
How will you know if you have achieved your aim?
Will there be specific measurable activity or uptake of services? Can you:
- monitor before and after knowledge and attitudes?
- evaluate your success?
- sustain the change over time?
Achieving behaviour change can require significant effort over a sustained period of time.
It is challenging to measure: for example, if you are trying to encourage people to access services, do you have ways of measuring whether they have done so? This may involve setting up monitoring with local services.
If you are measuring changes in knowledge or attitudes, you will probably need to survey people before and after the intervention. Setting up this evaluation is a significant work stream in itself. You may want to consult a range of stakeholders including service users about what is realistic. You will also need to factor in time and expertise to analyse the results.
Sometimes it is helpful to commission external research before you start: for example, a survey by a professional research company looking at knowledge, attitudes and behaviour.
Sustainability is a big issue. All too often projects simply die when the initial funding runs out so it is a good idea to plan for alternatives. For example, can you build your message into ongoing work with other organizations and volunteers?
Develop realistic and measurable goals, within your budget
Communications consultant, Liz Aram, talks about setting goals for community outreach work: consult, agree on goals, and make them measureable.
Community health goals: realistic and measurable video
Community outreach budgeting
Have a budget that is realistic for your aims
It’s essential that your aims are realistically geared to the budget you have.
Our experience showed that setting up and delivering an outreach programme can take considerable time, and resources.
If you have a smaller budget, this will probably be focused around a key worker who will try to get maximum impact through working with local voluntary sector groups, meeting with any statutory sector organisations and recruiting volunteers.
We found that many local groups can struggle financially. If you want them to take on your messages, you may need to budget to pay them.
Sometimes we encountered cynicism because people had come in with short term projects. They had just begun to set up a programme and make a difference, and then the funding ran out. This can cause more harm than good and make people feel your efforts are tokenistic. You need to manage people’s expectations of what you can achieve, for both internal and external stakeholders.
Building these relationships takes time. Do try to fund your most critical people over enough time to make and develop the contacts you need.
We found that developing the outreach was an iterative process. We went out and tried approaches and then adapted them depending on what worked, and what didn’t. It took time, and hence money, to understand what was suitable for different audiences.
You will need a sensible, realistic budget and allow a reasonable time period.
Jenne Patel, Diabetes UK:
It is really worth investigating the resources that might be available to you at a local level. For example, local commissioning groups may well have budgets for health promotion and people doing this work. You may be able to get your issue on their agenda or support work they are already doing. It’s also worth checking out budgets for equalities and diversity.
Governance and best practice: learn from experts
Be part of a community of people doing outreach: knowledge and governance
It may be helpful when setting up your project to review learning from other projects both locally and nationally, possibly even internationally.
Are there relevant networks you can join? These can be helpful when sharing knowledge and also offer support. They can also provide useful networks for developing further work.
Because we were a national programme dealing with some quite sensitive messages, it was important for us to have independent advice and governance.
So we set up a national steering group. This was chaired by an academic with considerable experience in our field and the ability to refer us to relevant research, learning and publications.
We also had a range of skills and experience including individual service users, the voluntary sector, academics, and health promotion experts.
We did not find many networks specifically concerned with outreach but the National Social Marketing Centre (NSMC) may be able to advise.
Segmenting your audience
Know who you are trying to reach: segment your audience
Even within a given population group, there may be many differences between people depending on:
- geography
- age
- gender
- cultural, religious and language needs
- socio economic background
When targeting black, and minority ethnic (BME) populations:
- some people are best targeted through ‘community’ channels, like specialist BME media, religious organisations, organised activities and day centres
- consider trusted opinion formers like religious leaders
- others may not relate so strongly to their ethnicity and may be more effectively reached by mainstream communications channels, using age, gender and location more than ethnicity
- never assume ethnicity is the most important variable in understanding people’s experience. Other things might be equally important
Learn where people are starting from in terms of:
- knowledge
- attitudes
- habits
- cultural factors
- access to resources
What do people already know about your issue?
What is their perception of your organisation?
Will your audience trust and believe your messages?
What factors might influence their perception, attitudes and behaviour?
Examples of factors include that affect attitudes are:
- audiences’ perception of relevant religious teachings
- their culture and habitual behaviour
- any stigma or misunderstanding
- their perception and understanding of current service offerings
What are potential barriers to them hearing and acting upon your message?
Are there people they trust who you can enlist to support your message?
What local support is available?
What has already been done and how can your work build on this?
Do people need translated materials and if so, written or audio: which languages?
What are the differences in knowledge and behaviour needs between people eg of different gender, age?
Where do people go? What do they read, listen to or watch?
What channels will best reach them?
Raising awareness at the Afro hair and beauty show: photo by permission of Ade Daramy
Research your audience before starting outreach
Iyamide Thomas of the Sickle Cell Society talks about the audience research by the NHS Sickle Cell and Thalassaemia Screening Programme to plan its community outreach work. This research informed every step of the project including:
- identifying who to reach
- understanding people’s starting point in terms of knowledge, attitudes and perceptions
- looking at specific local issues in particular locations
Audience research by by the NHS Sickle Cell and Thalassaemia Screening Programme
Tariq Saleem, Parkinson’s UK:
If you are doing work within a particular community, it’s important that you have spokespeople and visual images of people from that community. We did a lot of work to recruit people so we could build a library of images. We used these across a range of materials such as a DVD and literature and also in media work.
Parkinson’s UK website introduction in Urdu
Introduction to Parkinson’s: Urdu leaflet
Manjit Rooprah, Southall Community Alliance:
We have taken a different approach to reaching out to particular communities with health messages. Rather than having several different health conditions running their own campaigns, we work in the local area bringing together a number of relevant health messages for a specific community.
This more holistic approach might be a more cost effective way for public health to work – outside the traditional tramlines of condition specific approaches.
David Lusk, MS (Multiple Sclerosis) Society
We needed to understand better the experience of black and minority ethnic people living with MS (Multiple Sclerosis) and so ran a series of focus groups over a period of time to understand the issues, how we could support people and to listen to people describe different understandings of illness and support around a long term condition.
These discussions revealed a broad range of experience and some helpful insights into what challenges existed and what might be needed to meet those challenges. One area of interest was that of communication and language and what we could best do to meet needs in that area.
Using lived experience and native language speakers in outreach work
Oumou Diallo is a French speaking service user who has contributed to delivering outreach work for the NHS Sickle Cell and Thalassaemia Screening Programme. She has contributed her own experience and her knowledge of French. This particularly relates to activities and resources for French speaking people from parts of Africa and the Caribbean who are at higher risk of inheriting sickle cell disease, known in French as drepanocytose.
Oumou Diallo speaks about drepanocytose, French for sickle cell disease
Community outreach targeting: national, local or both?
Think about where and how it’s most effective to work
Some outreach is specifically local. However many organisations will have a national message but limited resources.
Consider:
- is it better to reach a large number of people nationally but in a more limited way?
- can you work in a limited number of defined locations to reach a smaller number of people in more depth?
- can you combine the 2 approaches?
- could you develop a joint project with another organisation?
Our learning suggests:
-
focusing on a defined local area enables a more integrated approach which is more powerful, involving:
- local service providers so there is a clear pathway for your target audience to follow. This is important for any health related behaviour change. For example, it may involve working with local GPs so they are prepared for people to ask for services
- local media, like the local paper and radio station
- local opinion leaders such as religious leaders
-
it is possible to combine a local approach with national media coverage to achieve a balance between in depth contact and wider reach
The right path for you will depend on your goals, your message and its complexity, and your budget.
Simple messages like ‘Eat 5 a day’ lend themselves to national campaigns and national media. More complex messages that require explanation and engagement require direct contact where there is time to go into detail.
Ali Orhan, British Heart Foundation:
For some years, we concentrated on Nottingham and the surrounding area so we could run a really focused and integrated programme. We knew that by working with local community partners, health service providers and local media we would gain greater access to community groups that we had not targeted before.
An example of a local initiative was targeting local Asian taxi drivers who can be at higher risk of heart problems due to the nature of the work, which involves sitting in cars for long periods of time and relying on fast foods whilst on the go. We encouraged physical activity and measured weight and heart activity before, during and after, along with setting realistic goals that the drivers were able to work towards.
Engagement: using local champions and opinion leaders
Work with people who know the target population at a local level
Reaching the target audience requires a local champion: someone with credibility with your audience, who understands where people go, and how you can meaningfully engage with them.
You may need translations and interpreters to reach some communities.
Where you meet people (places of engagement) may not be traditional health settings. We did sessions in barber shops, people’s homes, film festivals and even a restaurant.
Speaking to men in a London barber shop: photo used by permission of Ade Daramy
Where do people from your target population go?
What do they read and listen to?
What social media opportunities may exist, like networks and virtual communities that you can tap into?
What are the local politics of engagement, including the influential and respected individuals to work with?
What events might they attend?
Are there local and national celebrities that they would particularly respect?
Which local organisations particularly interact with your target group?
How do those organisations reach your audience?
Can you form partnerships with local organisations, commission them to do work on your behalf, explore whether your messages can be integrated into the work they do? For example, we worked with specialist Asian support groups, Sure Start Centres, churches and mosques.
Watching 'The Family Legacy' at a private home: photo permission of Ade Daramy
Are there local public sector health promotion people who could include your messages in their work?
Can you commission them to support a specific campaign?
Will they need translations? Are these written or verbal, and which languages are most important? Will you need interpreters at events?
Diabetes UK has worked with ‘community champions’. These are people from the target community whom Diabetes UK trains to deliver its interventions.
Diabetes UK case study
Diabetes UK Equality and Diversity Team designed the Community Champions model whereby people from Black, Asian and minority ethnic communities are recruited, trained and supported to raise awareness of diabetes in their local communities.
Jenne Patel, Diabetes UK:
We developed 2 different models of community champion to suit different funding streams.
In 1 model we offered intensive training and support to the champions including a 2 day training course and a toolkit. The other model was funded by Department of Health and Social Care volunteering fund and there was less support from us and more from existing infrastructures. We have done extensive evaluation of these projects and would be happy to share our learning with others keen to set up similar schemes.
Some of the key themes include sustainability; building knowledge and expertise for the longer term; building support networks through “super champions”, recruitment and training.
Targeting community outreach: reach people where they are
Screening 'The Family Legacy' at Maroons restaurant: photo by permission of Imo Akpan
Iyamide Thomas of the Sickle Cell Society talks about bringing outreach interventions to where people are already gathered, especially when targeting men. Her work included innovative sessions in barber shops and working with 100 Black Men of London.
Iyamide Thomas on reaching the ‘hard to reach’
Reach out to men with events and resources
See the launch of a leaflet campaign for men, explaining about NHS screening for sickle cell and thalassaemia. Iyamide Thomas, Sickle Cell Society outreach worker, explains the importance of men taking part in screening. In short interviews, men explain why learning about screening is important for them.
Video footage is courtesy Mo Osman-Kamara, Esselle Media.
NHS sickle cell screening: reaching out to men about antenatal screening
Those people who carry the sickle cell trait can donate blood if eligible. NHS Blood and Transplant ask donors to mention this trait at the blood donor session.
Bring health education into everyday settings
Our education event organised by the NHS Sickle Cell and Thalassaemia Screening Programme was part of a wider community outreach project, for people of African descent. The screening programme produced a video in a “Nollywood” style which combines educational material with a storyline that people find engaging as a drama.
The clip shows how the video was shown in a restaurant combined with a lively question and answer session. It illustrates the power of taking outreach to normal settings and facilitating engagement and discussion.
Reaching out to people of African descent
Volunteers: involving the voluntary sector
Involve the voluntary sector and service users from the beginning
People with direct experience of the issue are a vital resource, to ensure your messages are informed by real life experience and relevant. They provide:
- passion for the issue and long term commitment to it, important for sustainability
- access to people with direct experience who can shape the work
- materials, events, websites, newsletters
- volunteers to assist in the work
- case studies of lived experience for events and media work
You may also want to commission voluntary sector partners to deliver some or all of the work.
You will need clear rules about whether individual service users will be paid for their time or volunteers, how much per day or hour, and how this will be managed. This may require some careful thought and negotiation.
If service users are involved in formal meetings, ensure they are properly supported and briefed to do so. For example:
- explain the purpose and remit of the meeting, who will be attending, their role within it
- provide suitable background about the issues to be discussed and how decisions will be made
- clarify what the follow up will be
- avoid speaking in jargon
Volunteers: advice on working with service users
Real life stories add power to outreach projects: managing the input of service users
Hellen Adom, service user, member of the Sickle Cell Society and outreach worker describes her involvement in the outreach work delivered by the NHS Sickle Cell and Thalassaemia Screening Programme. Her story is moving and powerful to hear.
Hellen Adom, service user, about respecting service users
Service users and carers talk about what it is like to live with sickle cell disease
A range of service users give their insights into living with sickle cell disease and why it’s important to raise awareness of the condition and of screening.
Living with sickle cell disease
Interview: commissioning the voluntary sector
Factors to consider when choosing outreach partners in the voluntary sector and health promotion
Liz Aram, communications consultant, discusses the factors to consider when choosing partners to deliver community outreach. The voluntary sector can bring knowledge of the issues and commitment to the cause. Health promotion can bring local knowledge and contacts.
Choosing volunteer partners for outreach
Julian Lloyd, Alzheimer’s Society:
When creating partnerships in the voluntary sector it’s important that you are in it for the long haul. Then both parties have time to become experts in each other’s messages and to ensure they are communicating them effectively.
Patient interview: contributing my local experience
Service users contribute powerful experiences and local knowledge to outreach work
Anthony Mason lives with sickle cell disease and has both national and local knowledge of support services and campaigning. His lived experience and knowledge of the local area in Manchester has helped him to deliver innovative outreach in Manchester as well as informing a national outreach project.
Living with sickle cell disease, informing the national outreach effort
Stakeholders: engaging with local services
Work with stakeholders in local care and support services
If your outreach work is trying to direct people to access or use services, ensure those services know about the project and have had a chance to consider the patient pathway.
Do local services understand your issue?
Is there a need to educate local practitioners about your issue?
Will this require specific materials, presentations and events?
Is there a clear pathway so that people who attend your events or receive your literature know where to go?
If they go to services, are those services prepared to receive them?
Is there funding to support the work of local practitioners?
If funding isn’t available, is there a need for more strategic work at a higher level to make the case for funding?
Do local providers know when you are doing events so they are prepared to receive the public if required?
Do they support your activities, particularly since your work might create increased demand for the services they provide?
Is there a mechanism to measure any increased uptake of services?
Having a prominent local clinician on your side can make a big difference in getting your messages across within the health sector and in making the case for any strategic change (funding and resources).
Involve clinicians in outreach work: ensure messages are accurate
Comfort Okolo is a retired sickle cell and thalassaemia specialist nurse counsellor. She talks about her involvement with the outreach work conducted by the NHS Sickle Cell and Thalassaemia Screening Programme. Clinical input ensured that the messages were accurate, and helped answer difficult questions from the public.
Clinical input for accuracy, and answering questions
Community awareness: the power of champions
Find your champions
Liz Aram, Communications consultant, explains that champions were the most important success factor in delivering outreach work. They are the people who will work tirelessly on your behalf because they believe your message is important.
Champions work on your behalf because they believe
Patient champions bring their passion and create engagement
Service users help you address hearts as well as minds in outreach work.
Anthony Mason lives with sickle cell disease. He describes how presenting his personal experience provides inspiration and hope to others. At the same time, it’s important to give a realistic and balanced picture of living with a chronic condition so that people can make informed decisions about screening and care. Challenging stigma is part of his life’s mission and he brings that passion to his outreach work.
Champions present their experience of living with a chronic condition
Outreach materials: keep it simple and consult your audience
Keep it simple: less is more.
Consult your target audience when developing materials such as leaflets or presentations.
For us, it was an iterative process. We had many attempts and always took feedback from live sessions.
Ali Orhan, British Heart Foundation:
You need to remember that your audience may have very little knowledge or awareness. Therefore, it’s important to ensure the information you provide is tailor-made to meet the needs of your audience and delivered in a way which is both culturally and linguistically appropriate.
(presentation)
Beta thalassaemia major factsheet
Community awareness: use media to boost your reach
Boost your reach
The media spreads your messages and promotes events and activities
You will need to prepare stories suitable for the type of media: for example, stories with national or local angle; stories suitable for print or broadcast or online publishing.
You will need ‘experts’ and spokespeople. These may include clinicians or a range of service providers or academics. You must brief and train them, so they are clearly conveying your messages.
A store of personal stories will provide human interest. Finding these can be a significant work stream in itself. You will need to:
- identify people who have a relevant experience
- recruit people from the target community who will look and sound credible
- ensure these people are properly briefed and supported.
You may want to have a formal contract which specifies how their story will be used, how you will approach the media and consult them about each opportunity, which aspects of their story are off limits for the media, use of photography etc. You may need to provide media training for them and certainly briefing on how their story relates to your message.
Research the media that will be most relevant. They will have different policies about including material.
You may be able to get coverage for free because it contains relevant news, or you may need to consider paying for space. Sometimes, it will be a combination of free and paid. Negotiate and hold out for the best deal you can get.
We found that question and answer sessions with a clinician and a service user were particularly effective for TV and radio work. Those sessions where the public could phone or text questions were the most valuable.
Consider who will write features in print media: the journalist may need help with clinical accuracy. Sometimes, you may need someone who can write features and deliver them to the media.
Some organisations have successfully built their campaigns using a character. For example, the British Heart Foundation used a character called Patty Dumpling.
Use this approach carefully: think of the effect on people who have your target condition and make sure your campaign does not increase stigma or create unintended barriers.
Tips for media work to support your outreach campaign
Iyamide Thomas of the Sickle Cell Society led the media work supporting outreach delivered by the NHS Sickle Cell and Thalassaemia Screening Programme. She provides some tips on how to work effectively with the media.
Iyamide Thomas of the Sickle Cell Society provides tips about working with media
The Family Legacy
‘The Family Legacy’ trailer (1 min) ran on television and radio.
Sadia Habib, Breast Cancer Care:
We found that local radio was particularly effective in reaching South Asian women who could not read or who had low literacy skills, as well as reaching those who were not able to leave their homes as much, either due to a disability or isolation.
We used it to raise awareness of breast cancer and also to reach men who are not always aware that they can get breast cancer. The message was tailored to the community by ensuring it was linguistically and culturally appropriate.
Ali Orhan, British Heart Foundation:
Sometimes you can use social media and media together. We did a feature in an issue of Pride with Maria Carey. We knew she would tweet about it to millions of people, and by doing so both raised the profile of the charity and that of the health issue we were featuring.
Outreach training: tips on training your delivery partners
Train and brief your delivery partners
If you are using local partners to deliver the work, it’s essential to manage their training. Developing a training product was an important part of our work.
We found that even when we offered training to local partners, it was really important to keep checking that they were relaying our messages accurately. In some agencies, high staff turnover meant we needed to keep going back to refresh the training. For us, training others to deliver our complex messages was a big challenge.
The more complex your message, the more you will need to focus and monitor any training you give. We were fortunate that in addition to the Project Lead we were able to engage recently retired experts in the field (nurse specialists) to help deliver the DVD outreach sessions.
Gear the training to the right level of understanding. Some local agencies use members of the public who are well grounded in the community but who may have little formal education or training. We did need to be very vigilant that they had understood our messaging. Of course, this is complicated if they are delivering materials in other languages.
Jenne Patel, Diabetes UK:
We found you really needed to invest time in the people delivering your intervention: to train and support them and to make sure that the people you have trained actually do go out and engage. Crucially, once you have invested in them, you need to sustain their activity as long as you can.
One of the techniques we used successfully to reach people across the country was holding webinars. We also used blogging very effectively to spread awareness both amongst our partner agencies and the public.
Interventions: allow time to make contacts and plan
Allow plenty of time to make local contacts
It can take substantial effort and time to identify the right people to approach and to set up events and activities.
For example, when we wanted to deliver sessions in schools, colleges or universities, it often took a huge investment of time to identify the right person within the school who could arrange them. And that person varied from one school to another.
Similarly, it can take considerable persistence to set up events in religious settings. This might be done in a cascade way by contacting a national headquarters of a religious group and getting them to contact local branches. But often it can mean working with individual churches or mosques, identifying the right people, building trust and clarifying what is suitable for that particular setting.
Many organisations that we talked to had found faith leaders a powerful way into local communities. This was particularly effective for reaching men who may not access messages in health settings. Faith leaders not only provide access to audiences but also bestow credibility upon the message.
Sometimes they can also clear up perceived barriers by stating what the scriptures say, and what they don’t. For example, with sickle cell and thalassaemia screening, it might be that couple decides to terminate an affected baby. We used faith leaders to clarify the teachings about the acceptability of termination and particularly at what stage of pregnancy.
People will still make their own decisions but found it helpful to have some guidance and clarification.
Ashley Green, British Lung Foundation:
Sometimes it can take a lot of time to find the right people to move your project forward. For example, we were targeting mosques in East London. Some of the right people worked in the mosques, some worked in the Primary Care Trust.
We met with the faith leaders and worked with them to develop an appropriate approach. We were able to do lung capacity tests on the spot and publicised them with a poster saying, ‘have your lungs checked for free’. With the blessing of the faith leaders, we had long queues to have the test.
We also did research to find out local events and activities where we could piggyback our work. For example, we provided leaflets on stands and attended events.
Ali Orhan, British Heart Foundation:
Working with faith communities can provide access to groups that otherwise could be missed. However, it is important to be aware that some faith groups hold views and advocate practices which could sometimes be perceived as being that of your own organisation.
Shabana Begum, Hepatitis C Trust:
One approach that we found helpful was producing a CD of Islamic hymns with some of our messages included in it. These were relevant to all Muslims and so gave us excellent reach. We also did a lot of preparatory work with imams: we would help them to publicise our events in sermons for 2 weeks before the event. We also tapped into relevant teachings about the importance of cleanliness and health as a good deed. It helped us that we could actually deliver a swab test for hepatitis on the spot and this was popular with people.
Interview: tips on planning your community outreach activity
Arranging outreach events
Hellen Adom, outreach worker for the NHS Sickle Cell and Thalassaemia Screening Programme provides a practical guide to setting up and delivering outreach events.
Setting up and delivering outreach events
Outreach evaluation: deciding what to monitor and why
Use your evaluation data
Data is important not just to tick an evaluation box but to shape your understanding of what works, what doesn’t work, and crucially, making the case for future funding.
Design your evaluation tools at the beginning of the project so you are clear about what data you need, how you will collect it, who will see it, and for what purpose.
What is it realistic to measure?
Is it practical to collect this data within your intended setting and intervention?
When will you collect it? is it an ongoing part of every intervention and/or will you have activity before and after, or at strategic decision points?
How, and to whom will you present the data and what response are you looking for?
Do you have the right systems and structures to make sure that you can take on board any lessons from the evaluation?
One way we used data from evaluation was to inform politicians about gaps in knowledge and service provision. We presented our data to the All Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia. The Alzheimer’s Society also used this route.
Interview: tips on collecting and presenting data
Collect outreach evaluation data and use it effectively
Hellen Adom, outreach worker for the NHS Sickle Cell and Thalassaemia Screening Programme provides a practical guide to organising your evaluation and using the data to inform delivery and future planning.
Organising the evaluation, to inform future plans