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Research project: What is the distinct role and value of by-and-for organisations?

Bethan Prosser, Research Associate, discusses our plans for researching by-and-for organisations, and the opportunities and challenges of this new research project.

Research is an important tool for our strategy that can improve understanding, shape practice, build evidence and support evaluation and learning. Our back catalogue of research projects includes Navigating Change, The  Value of Small and The Value of Small in a Big Crisis, which advocate for the distinctive value of small, specialist and local charities. We want to continue to champion small charities and have been exploring topics that will:

The Value of Small in a Big Crisis report

  • be relevant to small charities, funders and wider stakeholders, 
  • help to shape policy and practice,  
  • produce evidence that is compelling and will be listened to,  
  • address issues of power.

Understanding by-and-for organisations

We have identified that researching by-and-for organisations resonates strongly across our work and these principles. A by-and-for organisation is led and run by the communities it serves and/or the people who use its support services.

Our new funding programmes build on ongoing work and learning with racial equity-led organisations as well as opening up new territory through supporting d/Deaf and Disabled people’s organisations. We are committed to supporting organisations that are clearly led by the community they’re serving, but we need to better understand their role, value and needs.

There are long-standing debates over the role of lived (as opposed to learned or professional) experience in the charity sector. Variations between sectors have led to a range of terminology e.g. user-led, self-help, equity-led and lived experience leadership.  

Deaf and Disabled people's programme image

Gateway into the Community workshop supporting people with learning disabilities

Although fundamental to the charity ecosystem, by-and-for organisations have often remained at the edges. More funders and commissioners are starting to recognise how communities can be better served by people who share lived experiences of the complex issues faced. Consequently, organisations led by marginalised communities can offer a refreshing antidote to the heavily criticised idea of being “hard-to-reach”. A self-help group is more likely to find funders “hard-to-reach” than the people needing its specialist services and activities.

Discussions with community-led organisations

We recently workshopped this research topic with a group of small charity leaders (including those from by-and-for organisations). These discussions highlighted how by-and-for organisations offer significant value through: 

  • having a better understanding of the issues facing a specific community, 
  • building trust and achieving “nothing about us without us”,
  • fighting oppression and empowering communities. 

But there are challenges over the varying definitions and meanings across different sub-sectors. Concerns were also raised over unhelpful funder practice, with the risk of “by-and-for” becoming a catch-all phrase. There is also a complicated relationship with equity, diversity and inclusion that needs unpicking.  

Why our research is focusing on this

 There is a lot of research that has already been done on this topic. Key recent reports include: 

  • Inclusion London’s investigation into the pioneering role of user-led organisations within disability rights and the challenges being faced,  
  • Imkaan’s participatory evaluation of the value of funding Black and minoritised women-led organisations in the Violence Against Women and Girls sector.  

However much of this research focuses on specific specialisms and sub-sectors. Through our initial consultations, we have found that there is still the need for better understanding at a broader level, in particular across funders and policymakers:  

"Research into this topic is vital work, it is a collective effort to uncover the true essence of these community-led initiatives. The significance of this research cannot be overstated, and now is the opportune moment to do it justice. Let's seize this chance to explore and recognize the remarkable contributions of by-and-for organisations, shaping a future of empowerment and inclusivity that is long overdue."
- Damian Joseph Bridgeman, Wales Advisory Panel member, Disability Advocate Community Leader

As a funder that is not led by a specific community, we are grappling with what role we can best serve in researching this topic. Driven by our strategic objectives, we are specifically interested in the following questions: 

  • What is the distinct role and value of by-and-for organisations?
  • What are the small, local and specialist dynamics of by-and-for organisations?
  • What are the practice and policy changes needed to better support by-and-for organisations? 

We want to better understand how equity and user-led organisations play a distinct role in supporting people to overcome complex issues and barriers. We wish to delve into the intersections between being led by community of identity and a community of lived experience of complex issues or trauma. These questions stem from our previous research and learning from co-design around our racial equity and d/Deaf and Disabled people’s organisations funding programmes and initial consultations.

We recognise this is a challenging and sensitive topic, and therefore approach this project with humility and an openness to learn. A participatory approach is clearly needed. We will be openly recruiting an advisory group to bring in expertise from lived experience leaders and the by-and-for sector. Building in learning and reflection from the start of the project is also important. 

Click on the image above for our strategy 2022-2026

We’re open for discussions about this topic, project design and possible partnerships with other funders, research organisations and stakeholders who are interested in by-and-for organisations. Please do get in contact if you would like to discuss shared interests: