Keeping it real: the importance of service user voice in campaigning

While working on a ‘Patient Perspectives’ report for The Hepatitis C Trust recently, I was caused to reflect yet again on the incredible insights and benefits to charity campaigning that only user involvement can bring. Whilst there can be challenges to overcome, involving users is not only essential to ensure campaigns are rooted in the needs of beneficiaries and to allow their voices to be heard, they are also a vital component of campaign success.

Keeping patients at the centre

Part of the job of any charity is to magnify the voices of their beneficiaries and campaigning is an essential way to do this. In order to work effectively on behalf of a particular group of people, it is essential that campaigns are rooted in their experiences and the unique insights they have as a result.

Take the issue of homelessness as an example: nobody can truly understand how it feels to sleep in a shop doorway on a freezing cold winter night without having done so themselves. While charities can’t make everyone in the country spend a night on the streets to empathise with the homeless, they can detail their users’ real-life experiences of homelessness to give people an insight into how it would feel.

Involving charity users also gives them a stake in the campaign. Lots of charities, including many that we work with at Principle, serve and represent people who already face significant disadvantages. These people, who may have previously felt marginalised, can be invested with new confidence by becoming involved in campaigning – particularly if their support helps to progress the charity’s aims.

Increasing campaign effectiveness

Centring campaign development around user experience, and campaign delivery on maximising user voice, is not only an essential function of charity campaigns, it also massively contributes to their success. It has often been noted of late that we are living in an era in which people are less interested in dry facts, preferring to trust their gut feelings about what feels right. As noted in a recent nfpSynergy blog, this has implications for the charity sector. Whilst charities should never dispense with evidence-based work, it makes sense in the current environment to campaign using a combination of hard evidence and more emotive, ‘real world’ perspectives.

Sharing charity users’ experiences increases the legitimacy of campaigns. It’s one thing to hear a dispassionate piece of information; quite another to hear the personal experience of someone who has been affected. Compare these two statements:

“Previous treatments for hepatitis C had a wide range of negative side-effects that prevented many patients from completing treatment and curing the virus. By contrast, patients had much better experiences with the new treatments, reporting very few side effects.”

“After taking the old treatments, I was bed-ridden for about five weeks, I couldn’t physically get up and walk because the pain was so unbearable. I was supposed to be on the treatment for 12 months but I left after three. The new treatment was so much better. There were no discernable side effects at all and I felt a genuine improvement from early on. I’m now free of hepatitis C and can move on with my life.”

Which of these statements made you feel more inclined to support increased access to the new treatments for patients with hepatitis C? People are more likely to care about an issue after hearing someone’s personal experience, so involving users in campaign communications is a great way of bringing information to life.

As well as helping to influence the public, charity users are often the best advocates for change when engaging with politicians. MPs receive a vast amount of correspondence and many requests for meetings, including from a wide range of charities. As a result, it can be hard to get the support of MPs, with so much competition for their time and attention. Personal testimony can be a very powerful way of getting attention, helping a campaign to stand out from the crowd. MPs are always keen to support their constituents, so involving charity users in engaging with their MP can be a particularly effective way of achieving political support.

There are many ways in which charities can support beneficiaries to campaign in this way. Campaigning workshops, for example, are a great way to help people to build up the skills and confidence needed to campaign effectively. Other sources of support charities may provide include producing campaigning packs and offering individual training to users to prepare them for campaigning activity.

Cancer Research UK’s ‘Test Cancer Sooner’ is a good example of a charity campaign that successfully achieved change with the help of beneficiaries. A key part of the campaign was beneficiaries sharing their experience of cancer, which helped to highlight the issue and mobilise petition signatures. The campaign led to a commitment by the Government to spend £300m a year, each year up to 2020 to speed up cancer diagnosis.

Many charities have also made good use of high-profile beneficiaries, which can be an extremely effective way of highlighting an issue. For example, Alistair Campbell’s campaigning work around mental health has helped to raise awareness of the issue and empowered others to speak about their own experiences. Whilst this may not be an option for all charities, where possible, it is a powerful way of publicising campaigns.

What are the challenges?

Involving users in campaigns presents challenges, as well as opportunities. Individuals may be so invested in an issue – or their particular experience of the issue – that they can be frustrated by the amount of focus given to their specific issue within the campaign. It is therefore important to work with people so that the reason for the campaign’s specific focus is well understood by the users involved. Whilst passion for the cause is essential in all charity campaigning, so is realism about the pace of change – it is important to be up front with all involved from the start about what can reasonably be achieved, and within what time frame.

Another challenge is making sure beneficiaries continue to feel engaged beyond their immediate involvement in the campaign. Care should be taken to provide timely feedback on the campaign to those who have been involved, explaining progress that has been made and expectations going forward. This is essential to ensure that users don’t feel they have been used and then forgotten about.

Another danger is only engaging with those who ‘shout loudest’. Although it’s important that campaigners are keen, those with the most confidence are not necessarily representative of others, and it is important that their views are not mistakenly over-represented. Charities need to make efforts to ensure that those who campaign are a representative cross-section of their users.

Sometimes charities may find they have the opposite problem. Finding people who are ready and willing to get involved in campaigning can be a challenge. Depending on the focus of the charity, service users may be too ill to get involved or be still in the midst of the particular problem so as to have no time, or capacity to be involved in campaigning on it. People who have used the charity for help and support in the past can be useful advocates – but some cut ties once the problematic area of their life has been addressed in an attempt to move on with their lives. Regularly engaging with those who have left the service, by providing updates about the charity’s work and appealing for help, is important in overcoming this challenge. Continuing to engage with past users helps to maintain goodwill, which increases the likelihood of past users getting involved in campaigning.

Some people might be put off by their perception of what campaigning entails, such as speaking publically. It is important to highlight the fact that campaigning encompasses a broad range of activities. Not everybody is going to be ready to deliver a speech about their experiences in front of a room full of people, but many more would be willing to have a five minute chat so that their experiences can be featured in campaign literature. Some may be willing to go public with their story, while others may want to remain anonymous. As such, it is important to tailor campaigning activity to different charity users.

It’s clear that the benefits of involving charity users in campaigning activity far outweigh the challenges. Doing so can hugely benefit service users, by increasing their confidence and allowing them to campaign for positive change. At the same time, user involvement also benefits charities, making campaigns more effective by adding unique insight and legitimacy.

Our top tips for meaningful and effective user engagement in campaign development and delivery

  1. Your users’ contributions should guide your campaign, rather than vice versa.
  2. Make sure your campaign features users’ personal experiences, not just facts and statistics.
  3. Make sure your realistic aims and expectations are clear to all involved from the start.
  4. Take care to ensure that the charity users involved in your campaign are broadly representative of the rest of your users.
  5. Tailor each individual’s role in your campaign to suit what they are comfortable doing and to their individual strengths.

Have you been involved in campaigning for a charity whose service you’d previously used? Has your charity run an inspiring campaign involving your beneficiaries? We’d love to hear and share your story – tweet us at @PrincipleTweets or email

Aidan Rylatt
Junior Consultant