Published on December 1, 2014

The right to participate: answers and new ideas at Involve

NHS Citizen People & participation

By Emily Graham

Emily is Project Coordinator at Involve. Working primarily on NHS Citizen, Emily is committed to the importance of people’s participation in building a transparent, accountable and more inclusive democracy.

This autumn has been an exciting time to join Involve. There has been a real feeling of possibility and an appetite for change in the lead up to and wake of the Scottish Referendum – the constitution is back “in fashion” and there is talk of democratic revival in the air.

On the day of the Scottish Referendum itself, Involve was conducting its own “democratic experiment” with the public and partner organisations through NHS Citizen. This is a project commissioned by NHS England to answer the question: what is the best way for NHS England to take into account the views of all the public when it makes decisions? At Involve, I will be working mostly on this project, with other Involvers, DemSoc, Public-i and the Tavistock Institute, to make sure that the project answers this question and hopefully forms a new culture of collaboration between NHS England and the public.

At Involve, I am interested in developing my experience of public participation in practice – having advocated for its importance in the human rights field. My interest in human rights and the right to participate in decision-making began in the north-east of Brazil, whilst volunteering for GTP+, when I attended a conference organised by and for a group of people traditionally excluded from formal political spaces and processes. Since then, this interest has been strengthened and nurtured through my Masters in Applied Human Rights at the University of York, when I learnt how human rights could enable communities to engage with political processes and participate in decision-making with the organisation Natural Justice, and also in more recent research focused on “human rights cities”.

I joined Involve newly arrived in London from Geneva, where I had been working for the Quaker United Nations Office on the Human Rights & Refugees programme. As staff of a recognised and accredited civil society organisation at the UN, I could pass through the guarded gates of the UN buildings, past the public protests and demonstrations outside, to attend meetings and (occasionally) participate in proceedings. Working in this environment made me reflect often on who can participate in decision-making, when and why. Arriving in London, with Occupy Democracy gathered in Parliament Square, I found myself asking the same question. Now I am enjoying exploring answers and alternatives here at Involve – where others believe as passionately as me that when it comes to decisions that affect people’s lives, people should be able to (and have a right to) be involved and to take part in a meaningful and valued way.



Feature picture: “Human Right” by Zack Lee, Creative Commons, see the picture on flickr

2 Responses to “The right to participate: answers and new ideas at Involve”

  1. Leane Owen
    February 13, 2015 at 1:52 pm

    Dear Emily,
    I am a Masters Research student at The University of Brighton and I am particularly interested in involving people with Dementia in research. I am wondering if you have any guidelines on the ethics relating to involving people with Dementia in PPI groups and in research?
    Kind Regards,
    Leane Owen

  2. Emily Graham
    Emily Graham
    February 23, 2015 at 2:41 pm

    Hi Leane,

    Thanks for your comment – it’s a good question, especially as we are exploring how to ensure that everyone can be involved in NHS Citizen, including people with dementia. However, I think for your question specifically, the other INVOLVE would be better placed to help. INVOLVE ( works on public involvement in health research and I believe they have done some work on involving people with dementia in research (for example, this conference in 2004 –

    Hope that helps!

    Thank you,

Leave a Reply