Build trust and confidence to engage with seldom heard groups

Originally posted on 04/04/2019 on the Patient Information Forum blog:


Building trust and confidence is the first step to working with seldom heard groups according to expert speakers at PIF’s event on working with so-called ‘hard to reach’ groups.

Common themes emerged from projects including working with Black, Asian and Minority Ethnic (BAME) communities in Wales, the unemployed in Leicester, sex workers in Leeds, the homeless in London and trans women across the UK.

Key messages from presentations and the event’s roundtable workshop included:

  • Spend time planning your engagement
  • Consider outsourcing research, engagement and user testing or work with a voluntary sector partner
  • Find out where your audience is and go to them
  • Don’t expect to be welcomed with open arms
  • Work with community leaders and influencers
  • Take time to build trust
  • Work out what’s in it for communities, their priorities may be different from your organisation’s assumptions
  • Think about activities that will build confidence for participation
  • Understand the cultural norms and language of specific groups
  • Understand the health needs of a particular group and the barriers to engagement with services
  • Involve users in the development of projects, right from the very start, and user test before launch
  • Make user testing task-specific to ensure users have been able to understand the task, and that information provided has met its purpose
  • Develop peer-support from within the community to help develop and deliver information and support others. If the community is disparate consider online engagement.
  • Consider the appropriate method of dissemination for the target group. Working through community groups and community leaders, using online communities, direct messaging, social media and WhatsApp have all proved successful.
  • Consider how learning can feed into information work plans for national charities, in terms of imagery and language used in materials and on websites, and how engagement in research and local volunteer groups is promoted.

PIF’s event Chair and Non-Executive Director, Anne Ballard, summarised ‘You need to be able to walk in someone else’s shoes. Better engagement leads to better understanding and better outcomes.’

Presentation case studies

Money advice is a route to the health needs of the unemployed and unwaged

More than 50% of clients using the Moneywise+ service have ill health and disability and more than 40% are from BAME communities,’ said Jenny Hand, CEO of Reaching People, Leicester. Moneywise+ aims to improve money management and digital skills among the unwaged.

‘I was shocked how many clients had ill health and disability,’she said. ‘Employment is rising so the residual unemployed are more sick and disabled. There is a link between managing health, for example, booking appointments online, and having the ability and confidence to attend. People need navigators to help them through the system.’

Confidence among this group is very low, Jenny said. ‘We learnt we need to start with the individual. We will start with money, health or digital issues whatever is most pressing’.

Each individual has a tailored 1-2-1 mentoring and support relationship. Group work can be challenging because people may be reluctant to discuss financial and health matters. The project had recruited two peer ambassadors who are helping others after 18 months of personal support.

The target is for clients to gain digital skills to help them manage their money and build confidence to be in a group environment. Although the project is not monitoring health outcomes, it seems people are also developing the confidence to discuss and manage their health.

Baking a difference

Baking sessions are one way Reaching People is developing community engagement through a partnership with Planet Leicester Bakers.

Founder baker, Michelle Stratford, described successful bread baking projects run in care homes for the elderly and for mental health in-patients.

‘Bread is a feel-good factor. It brings a feeling of positivity no matter what culture or community people are from’ she said. ‘It provides a safe place and you have to wait for bread, so it provides an opportunity to talk.’

Sharing Bread+ is a new partnership with Reaching People. It aims to provide a safe place, encourage opening up, provide peer support and build positivity and confidence via baking. The next project will work with people who have experienced hate crime.

‘There are a lot more community ovens than you think,’ said Michelle. ‘You only need a domestic oven to run a baking session.’

You can read Planet Leicester’s blog of their session at the event here.

Hep C cure Within Reach

The Within Reach Project aims to raise awareness of Hepatitis C among sex workers in Leeds. The New NHS Alliance worked with Basis Yorkshire, an organisation supporting female sex workers, to deliver the project funded by Abbvie.

A survey of 70 female street sex workers found there was a huge stigma about seeking help for Hep C and lots of myths about transmission and treatment. Only one woman was on treatment although eight identified as having Hep C, said Dani Boyd-Waters, representing the Alliance.

Although health information was provided by local sexual health clinics, high levels of illiteracy among sex workers meant it wasn’t useful.

The New NHS Alliance has an ethos of health creation. For this project this focused on:

  • All frontline staff working with homeless/sex workers trained in dry blood spot testing.
  • Health literate information for sex workers.
  • Testing in anonymous community vans on the street.
  • Drop-in centres for treatment via Basis Yorks.
  • Peer-to-peer support: two street workers on treatment encouraged others to get tested.

So far three people have been cured of Hep C, two more have entered the treatment pathway and awareness of Hep C transmission, testing and treatment have increased.

‘It’s vital to develop peer-to peer-lived experience champions.’said Dani ‘An individual is more likely to listen to someone from their own community. It’s a slow step-by-step process to build confidence.’

Building resilience among London’s homeless

Developing lived experience champions has been vital to improving access to health services for homeless people, said Kate Bowgett, Director of Advocacy at Groundswell.

Homelessness has a devastating impact on health. Life expectancy for men is 44, for women, it’s 42. There is poor access to health services and deaths on the street have been increasing. This is a group that cost the NHS money; they use A&E and unplanned admissions more than the general population.

Groundswell carried out insight work and asked what would help people get to a GP. They said ‘what if someone took me’. Groundswell’s peer advocates have all experienced homelessness. They negotiate with receptionists, go to appointments and deal with follow-up issues on behalf of clients. The scheme started in Westminster and now operates in nine London boroughs. Every £1 spent on the scheme saves NHS £2.50.

‘The use of peers with lived experience helps builds trust and avoid stigma,’ said Kate. ‘If you’re homeless you have been let down by services, so trust in services and professionals is low. The peer helps them navigate the system and get the care they need.‘

Groundswell takes an asset based-approach to people. ‘We value the skills and experience you have gained through life no matter how chaotic your life has been.’

Building resilience workshops at hostels and day centres aimed to tackle mental health issues, which were identified as top priority for the charity in 2015. Almost 70% of homeless people surveyed said they wanted support with mental health.

Most of the available materials on mental health and improving wellbeing are aimed at the housed and financially stable population, said Kate.  Sleep hygiene, for example, is difficult in hostels where lights are on all night and only caffeinated drinks are on offer. After a lot of flip chart sessions in hostels and day centres, a workbook has been developed to help people make small changes to improve resilience.

The charity wants to look at diabetes next. It plans to use the methodology to see how information can be reformulated to work for homeless people.

BAME films in Wales

Pocket Medic has worked in partnership with Diabetes UK to provide videos on diabetes in English and Welsh, but realised they needed to reach into other cultures.

‘We worked with Diabetes UK and looked at producing a similar film in four languages, tailored with food and other appropriate cultural tweaks. It took ages to set up. I thought people in communities would bite my hand off,’ said Creative Director, Kimberley Littlemore. ‘I quickly learnt film of white Welsh people had no relevance to groups of African women’.

Kimberley worked with Cardiff-based Hayaat Women Trust to provide a translation and culturally appropriate video, based on consultation with Somali women. The final video features Ayan

Ayan works at the Trust to help empower young women. She came to the PIF event to explain why there was initial resistance to the project.

‘We are quite a closed community. You to need to become a familiar face before you approach us. If we don’t know you, you won’t get a response. We are quite conservative, but if you are doing something helpful and will present the community conservatively it will be supported.’

There are also cultural barriers to watching videos. ‘A lot of people with type 2 diabetes are older so might be put off. You need to tell them it is documentary-based information and has nothing to do with Hollywood. The Somali community, especially the elders, do not access the internet’ she added. ‘One of best ways to spread the video is via WhatsApp or Facebook on smartphones’.

Ayan also recommended working with a community leader and finding out who has influence.  She has received positive feedback from the community since featuring in the video.

Prostate Cancer UK – working with trans women on prostate health

Working with cultural sensitivity was crucial to Prostate Cancer UK’s work on prostate health with trans women and non-binary people, said Minal Smith, Health Information Officer.

A trans woman is someone who is assigned male at birth but identifies as a woman. Non- binary includes people assigned male at birth but who do not identify as male or female.

Not all trans women go through transition, but even if they do the prostate is not removed and they can get prostate cancer. The risk for trans women is not known, cases may be under-reported and there are very few cases in the literature.

Trans women experience real health disadvantage and 29% feel discriminated by HCPs. Prostate Cancer UK conducted face-to-face interviews, an online survey and surveys at a trans festival to understand needs in relation to prostate health.

They found many barriers to reaching trans women. These included denial or not knowing they had a prostate, not realising they had a risk of prostate cancer and HCP reticence to mention prostate cancer to trans women, who may be coded on medical records as women and so not receive prostate related information.

Minal shared the following lessons:

Lesson 1: Ask and learn and don’t expect to get it right first time. The first bit of advice from trans women was to get language right so people wouldn’t disengage. ‘Gender reassignment’ for example is not acceptable.

Lesson 2: Factor in lots of time.  People often feel they are asked questions and then left hanging, so it is important to maintain involvement and dialogue. Engagement with trans organisations helped build trust and identify people to talk to.

Lesson 3: Find out where your audience is and go there.  The trans community is mostly online, many are isolated and rejected by families and clinics can be 3 or 4 hours away.  Prostate Cancer UK used an online survey, phone interviews and face-to-face interview at the Sparkle festival.

Lesson 4: Find out the best way to reach your audience. Trans women preferred to seek information online, but Prostate Cancer UK’s messaging that only men have a prostate was offensive to them. They wanted to be enabled to be part of the wider organisation with information via the home page. Most said they wanted specific health information alongside general messages. An FAQ format and case studies were preferred.

Widening the reach of the MS Society

The MS Society wanted to talk to people from groups it felt it wasn’t engaging with to find out about their experience, why they weren’t engaging and the barriers they faced, highlighted Niamh McGarry, Interim Evidence Manager.

The Society had very little data on certain communities including the newly diagnosed, severely disabled, Black, Asian and Minority Ethnic (BAME), Lesbian, Gay, Bisexual or Transgender (LGBT), diverse faith communities and people living in rural areas.

It commissioned an agency to conduct interviews with people with MS across these communities. 70 people were interviewed who did not normally engage with the MS Society.

  • 96% had heard of the MS Society, but more than half didn’t engage in any way. Information and support via the website was the best-recognised area.
  • 60% of newly diagnosed were aware of the Society but didn’t engage.
  • 75% of BAME had awareness but were not engaging
  • Higher engagement in rural areas (65%) than urban areas (45%).

‘Only 13% had participated in the research we conduct on people’s needs,’ said Niamh.  ‘We use the results to steer policy campaigning and these groups are not heard.’

‘People didn’t feel eligible because of survey criteria or because they weren’t aware of the opportunities. The key learning was if people feel excluded once it can make them disengage.’

The Society has made some changes.  It is less stiff in its messaging, more direct in its use of language and uses move diverse images.

‘It’s not always about what you are trying to communicate but what is received, how and where you say it,’ said Niamh.

The Society is creating an action plan to delve deeper. There were clear differences between groups. Asian groups engaged online but the black ethnic group didn’t. The LGBT group engaged solely online and didn’t want to be involved in focus groups.

‘This was a group of 70 people from multiple groups’ said Niamh. ‘This is a starting point. We can take some of these findings and better understand how people want to engage and then evaluate.’

Working with people with aphasia to develop information that works

The Stroke Association has worked with specialists and patients to develop information for people with aphasia, said writer Deborah Fajerman.

Aphasia means part of the brain responsible for language is affected. This causes difficulty with speech, reading, writing, the ability to process numbers and other cognitive problems.

The material developed is not necessarily designed to be used independently but as a communication aide.

‘Easy read information is not specific enough,’ said Deborah. ‘With aphasia, you can only show the specific thing you are trying to get across without any distraction in the background or text.’

‘The important thing is collaboration,’ she said. ‘You need to work with others and particularly users. Storyboarding is important, as is checking you have produced something that works. You have to check users have understood the meaning.’

Deborah recommended breaking words down into key messages, using relevant images to convey complex issues like emotion, recognising that words and pictures don’t function alone and stripping information of any distraction.

She set delegates a task to collaborate, storyboard and check meaning on a key set of messages in a fun-packed words and pictures session.

Published on: April 17, 2019