Serious clinical and service failings in the UK and internationally have increased the calls for patients and the public to be engaged in healthcare to improve patient safety.
I first got involved in improvement as a grieving mother who had lost a child, my 17-year old daughter, who died as a result of a failure to manage her heart condition
These calls are now reflected in key policy statements such as ‘Patients and their carers should be present, powerful and involved at all levels of healthcare organisations from wards to the boards of Trusts’ (A promise to learn – a commitment to act: National Advisory Group on the Safety of Patients in England, 2013).
The aim of the ‘SIG in PPI and Diversity’ is firstly to explore what PPI and diversity and equality means in the context of quality and safety improvement and how a broader group of patients and the public can best be involved in these activities. Secondly, as part of my Health Foundation research project on PPI and patient safety, I am interested in testing some small interventions to involve diverse groups in different areas of patient safety and quality and am keen to find people in NHS Trusts who are willing to work with me in developing these interventions.
How – and why? – did you first get involved in improvement; and what has been your journey since then?
I first got involved in improvement as a grieving mother who had lost a child, my 17-year old daughter, who died as a result of a failure to manage her heart condition. I was subsequently unable to get open and transparent answers on why these failures occurred. This led to my getting involved with patient safety, both as a campaigner seeking justice for my daughter and greater accountability when something goes wrong for families, but also as a patient activist wanting to change the system and make it safer so no one else experienced what my family has had to go through. I gradually became involved in all aspects of patient safety.
There needs to be a wholesale change in the way we involve people and it needs to be done using partnership, co-production and collaborative methods. It won’t work just to involve people at the end of a process.
This started at a local level by joining a committee to implement the recommendations coming out of an inquiry looking at the issues connected to my daughter’s death and affecting a number of other families. I subsequently graduated on to becoming the chair of the Trusts’ Patient and Public Involvement Committee (PPIF), the predessors of Healthwatch, and sat on their Board with observer status as well as a number of other key patient safety committees. At the same time, I decided to leave my job as a senior lecturer in social work to undertake a PhD in patient safety, looking at patient safety incidents from the standpoint of those directly affected by the issues. In 2008 I was invited to become a Patients for Patient Safety Champion, part of the WHO Patient Safety Programme.
Since completing my PhD, I have worked as a as a patient representative with all the main national organisations and more recently was deputy lay chair of the National Patient Safety Steering Committee at NHS England, chaired by Dr Mike Durkin and a Patient Safety Champion on the Imperial College Health Partners’, Foundations of Safety Programme for senior Board leaders across North West London. I am currently a member of the National Patient Safety Response Advisory Panel (made up of senior experts) at NHS Improvement), as well as advising their patient safety team on various aspects of patient safety.
What most inspires you professionally?
As a former senior lecturer in social work I have a social science background. This means I have always been conscious of the social environment and how this impacts upon different groups of the population. For most of my life I have been passionate about creating a society that is based upon social equality, non-discrimination and justice.
As a result of what happened to my daughter, in which she (and her family) was denied information, access and treatment for her heart condition, I have become even more determined to change the health care system to make it fairer and more equitable for all groups using it and to empower patients and the public in their healthcare and treatment. Since getting involved as a parent in patient safety and completing my PhD, I have taken up researcher posts connected to patient safety and quality and patient experience, both at King’s College and Imperial University, as well as at the King’s Fund and have published several articles on patient and public involvement in patient safety and quality. I am currently based at King’s College London, in the Centre for Implementation Science since being awarded a Health Foundation Improvement Science Fellowship in 2015. The fellowship provides a fantastic professional opportunity to further my work on PPI in patient safety and quality improvement and to collaborate with most of the leading experts in healthcare in improvement science, through the Health Foundations’ Improvement Science Network.
Over the years, where I have seen these projects fail is where the involvement has been tokenistic and lacking in inclusivity, ill thought through in terms of the objectives of the work and a lack of support for those who wish to be involved
I am now taking forward my own research project entitled: Developing and understanding the impact of diverse patient and public involvement in patient safety improvement activities and how this can be supported’ and the key research questions are: how can diverse groups of patients and the public be optimally involved in different patient safety activities and be empowered in this process; what factors hinder and support involvement practices in patient safety activities with different groups of patients and the public and what metrics provide a useful way of measuring the process of involvement and whether involvement impacts positively on patient safety.
I am setting up the SIG as a way of further developing this research as well as to promote greater discussion about the best ways of achieving greater PPI and diversity in healthcare improvement and am keen to use collaborative and participatory methods with healthcare professionals and a diversity of patients and the public as a way of achieving the goals of the project.
Can you share a hard-won lesson you’ve learnt about what makes for a successful (or unsuccessful) improvement project?
I have mainly been involved in projects to improve patient and public involvement in different healthcare activities and particularly patient safety. Over the years, where I have seen these projects fail is where the involvement has been tokenistic and lacking in inclusivity, ill thought through in terms of the objectives of the work and a lack of support for those who wish to be involved. A particular issue has been a failure to understand why different groups of patients and the public wish to be involved.
Whether we are talking about shared decision-making at every step of an individuals’ treatment or involvement in improvement, a partnership approach needs to happen right from the very beginning
This is often because they have had a poor experience of care or been harmed in some way or struggled with access. This may result in individuals having very different experiences which they bring into the involvement process. In this situation, as in my own experience, it is very easy to label or exclude people and to handpick those whose faces or experiences may seem to fit better. In my view this simply compounds the narrow linear mechanistic top down model of PPI that often operates in healthcare and which then fails to achieve the partnership goals that documents like the NHS Constitution say should underpin all healthcare and treatment in the NHS.
What change could we make that would do most to embed continuous improvement in health and care?
There needs to be a wholesale change in the way we involve people and it needs to be done using partnership, co-production and collaborative methods. It won’t work just to involve people at the end of a process. Whether we are talking about shared decision-making at every step of an individuals’ treatment or involvement in improvement, a partnership approach needs to happen right from the very beginning and patients and the public should be involved at every stage from start to finish. In order to make this happen proper thought needs to be given to supporting the involvement process. For example who to involve and how to they represent the wider demographic of the people affected by the issues, how best to communicate with individuals so they have time and space to be properly involved, reimbursing individuals for travel, expenses and time where possible in the least time consuming way and taking the time to explore how different groups of people would like to be involved and supported as different groups may have different needs because of language, disability, geography etc.
Why did you join Q?
I was keen to join a broader group of improvers, that also included patients and wider members of the public to be part of opening up a broader debate about co-producing healthcare with a greater diversity of people. I was also aware that Q originally came out of a recommendation from the Berwick report after the Francis Report was published into the clinical failings at Mid Staffordshire hospital, to develop a network of 5000 patient safety champions. This proposal eventually turned into the recommendation for a Q network, but as I am very interested in safety and quality, I thought it would be a good idea to get involved. Also as my research project is looking to test some interventions around PPI in safety and quality, I thought the Q network provided an ideal place to try and recruit people at a national level who might be interested in helping me to take the project forward.
What new connections (and collaborations) have you made as a result of joining the Q community – and what have you learnt so far?
With respect to involvement in Q, it is still very early days for me as I am extremely busy as a patient champion in patient safety as well as working on my research project. However, I have been to a few Q events that I found very lively and friendly and I look forward to getting further involved in meeting people via setting up this SIG.
Can you tell us about something you’re currently working on (that Q members might be able to help with/feed into/learn from/contribute to)?
My first achievement upon starting my Health Foundation fellowship was being commissioned by the editor of the Journal BMJQS to write an article on what are the current problems with PPI in the NHS. This led to the publication of my article ‘From tokenism to empowerment: progressing patient and public involvement in healthcare improvement’, this has now been downloaded thousands of times.
I would now be keen to use this publication as a basis for further developing the conversation about PPI and diversity and coproducing healthcare in quality and safety improvement. If this SIG attracts interest I would also like to hold a meeting at the Health Foundation to allow us to have a more open and dynamic conversation about the issues involved.