Seven Things that Patients Bring: The Benefits of Patients as Partners for Change

Why this Blog

There are huge benefits to patients being true partners in the design and delivery of services, and in improvement work and change. That is my quasi-religious belief. It is the fuel for my passion, and the reason I do the work I do. But I have to admit the formal evidence of impact is scanty.

I wanted to test my faith and explore the impact of patient and public engagement in service and quality improvement. In these difficult healthcare times, we need to better articulate what involvement is for. One step is to ensure that patient and professional leaders are clear about the different levels and purposes of involvement (see for example www.engagementcycle.org).

At the same time, people do have the right to be involved. And involvement is the right thing to do, regardless of outcome. But let us now augment the reasons, and get clear about the impact. Nobody is going to take us seriously if we don’t. Few hard-pressed clinicians, managers or policy makers are going to move beyond ‘ticking the box’ unless they see the benefits. Why should they?

My research as part of my CLAHRC NW London Fellowship has explored what patients can bring to the party. This blog is based on emerging findings from that research. I hope that the ‘Seven Benefits’ framework helps better articulate what patients can bring, and helps shift us towards patients being regarded as true partners for change.

1. Richer insight

Time and time again, I have seen patients shine a different light, often deeper and broader, on problems to be tackled. A service improvement project might initially be aimed at tackling what happens in an out-patient clinic. With patients or carers in the room, the goal posts shift for the better and parameters broaden – people will talk about themes of access (transport, parking) or humanity and different aspects of customer care (staff smiling or looking up at people when they come in at the reception desk).

The vision for the project and its intended outcomes shift. The limitations of narrow thinking and pet assumptions may be challenged or revealed. The improvement work to be done will be on a better track and people involved more confident in the benefits.

2. Potential solutions

Patients often have the guts, insight, imagination and freedom from institutionally limited thinking to ask ‘what if…’? They also widen the array of options for improvement and change.

One Trust spent thousands of pounds on glossy information leaflets because they thought that lack of knowledge about MRI scans was leading to people not turning up. I was there the day a nurse said: ‘we’ve got it so wrong. I’ve been speaking to a patient who was scared of going into the machine’. So they tore up the leaflets, got some patients into help them find ways to allay the fear. They redesigned the environment and played music (of people’s choosing) for those going through the machine.

As Mark Doughty, who leads patient leadership programmes, states: “Patients may not bring ‘the’ answer. No one party holds the whole truth. However they help to generate a wider set of solutions that can be explored”.

3. Changing relationships

Healing is about relationships. With patients in the room asking questions, and moving beyond their own agendas, and wanting to ‘give their views’, others are given permission to explore and go beyond defensiveness. The tone of the relationship may alter as people work together on problems and solutions.

Without blame, particularly if the conversations are well-facilitated, people help each other move from ‘us and them’ conversations to a different and more ‘productive relationship’ as Mark Doughty has called it – one that supports conversation that produce outcomes. Power shifts and relationships become more equal.

As Mark has often said, this is about ‘modelling the sort of relationships’ that are at the centre of healing experiences. In this sense the process is the outcome – the nature of the conversations and relationships are important in of themselves. I’ve witnessed one doctor come away from such a shifting conversation to say that this is how she will work with patients in the future.

4. Individual benefits

Patients benefit from being involved. They can feel more confident, develop their skills and expertise and actually feel better. A friend of mine said that being involved was important to her recovery from mental health problems, particularly because she felt valued for her contribution.

This means people not being narrowed to ‘telling their story‘, but being able to call on, what Alison Cameron has termed ‘frozen assets’ – those qualities and traits that may have been buried for years while ill. Of course, some talents develop anew as a result of having experiences and insights into what could happen in healthcare (or what should have happened).

Staff will gain too. Morale can be lifted if they see that patients are not asking always for a ‘moon on a stick’. As conversations become deeper about what can be done, they can feel that we are truly ‘all in this together’. The NHS environment is currently toxic for many clinical and non-clinical staff. True involvement in service improvement could benefit everyone, particularly if patients can be seen as ‘supplying help’ rather than as the ‘demand problem’ to be solved.

5. Better quality decisions

If people have been involved as equal partners and are partners in decisions – not just feeding back for others to go away and make them – then trust and confidence can be enhanced or restored. If people know why decisions have been made and have been part of that process, have had the chance to explore assumptions and being in a space where honesty about difficulties is apparent, then consensus is easier (NB. Consensus is not that everyone has to agree firmly, but that all can live with it).

This has deep implications for transparency, governance and accountability. I once went to a ‘blue-sky’ event on Community Mental Health Teams and were asked as users how many we wanted. Loads, was the answer, until the finance director was straight with us about resource constraints. Then the real discussions started and, while disappointed, we understood limitations and appreciated honesty.

As Rebecca Myers, Transformation Lead at Basildon Trust has said: We need to have difficult conversations and remain at the table’. Just as honesty in the consulting room about ‘breaking bad news’ is hard but worthwhile, so this is the way to re-build trust and confidence in healthcare decision-making.

6. Changing practice

I have seen and heard about dozens of changes in practice as a result of patients being partners in improvement work. Making guidelines more flexible, better ways to tackle access and equalities, tackling attitudes and behaviours, different ways of meeting unmet need, the list is endless.

We all have our favourite examples. Mine stems from a story I have told often. If only the staff on the psychiatric ward had involved us in making the ward safer, we would not have restricted our thinking to removing ligature points and locking doors at night. Instead, I would have recommended more activities, better food (so I didn’t have sleepless hungry nights), and more staff to talk to. Instead, the nights were longer and three of my friends found other ways to die.

Many academics would like to measure the impact of involvement on ‘downstream’ markers of success. These include patient experience, quality, outcomes, utilisation and cost. However, this search is hindered by the problem of causality and attribution – was it only involvement that caused the change? I think it is more reasonable and practical to look at changes in practice. I have also seen the search for the holy grail – seeking better health outcomes through involvement – diverting attention from getting on and doing it.

7. Benefits beyond the project

If it is done well in diabetes, it can be done well in neurology. When people see the benefits of patients as partners for improvement and change in one area, they will help spread it to others. It is a virtuous cycle with implications for scaling up improvement processes, spreading good practice and for sustainability. People will be confident in the methodology if it has the benefits above, and the Board will find ways to develop the cultures and systems that support involvement in improvement.

I’ve seen doctors mandated to take part in projects. At the beginning they sit, irritated, with their arms folded or looking down at their smart phones as patients are ‘allowed’ in. By the end, they want to bring patients in properly – not just as feedback fodder – to try it in their own areas. Voila! Clinical engagement.

The conditions for success

I see each of these benefits as equally important. Some would argue that one or more of the benefits leads to the others (changing relationships, for example). Those with a linear mindset would argue that the most important benefit is ‘changing practice’. I think the seven benefits are inter-dependent. Success in one can lead to success in the others.

Of course, realising some, or all, of seven benefits depends on whether the work is done well. If it is not, few of these benefits are maximised or even get to first base. In fact, poor engagement in improvement work is worse than none at all. Many patient leaders I know get ill again in their frustration with badly undertaken engagement exercises. And many professionals will not return if the process is done poorly and the above benefits do not accrue.

So, what are the conditions necessary for good work? That is another part of the research and will have to wait for another day. And any ideas are welcome.

Acknowledgements

I am thankful to those that took part in the research (including Andrew Craig, Karen Maskell, Anya de Iongh, Ruth May, Nicola Kingston, Trevor Fernandes, Julia Holding, Sam Hudson, Rebecca Myers) and other Patient Leaders (such as Ceinwen Giles, Alison Cameron, Michael Seres, Dominic Stenning, Brenda Murray, Dominic Makuvachma- Walker)…. and many more. My thinking on relationships has been heavily influenced by Mark Doughty.

If you liked this blog, do have a look at some of the other posts on futurepatientblog.com Finally, if you find this blog useful and use it in your work, please acknowledge it and us.

© David Gilbert, 2015

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6 thoughts on “Seven Things that Patients Bring: The Benefits of Patients as Partners for Change

  1. I agree about the impact often being part of actually engaging in a positive way never mind any impact further down the line. I think that getting on with it having established the purpose is key rather than delaying in pursuit of an esoteric, perfect framework.

    Some really good points here David, really look forward to hearing more from your research.

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  2. Thank you, David. Really helpful as I am trying to write up a literature review about what has happened since 2010 at the clinical commissioning interface. This is with regards to the relationship between ‘service users’ and the public as citizen representatives and clinical commissioners. I am focusing on the experience of the process rather than the outcomes further down the line as you say. The cultural shift in relationships is key and it is interesting to see what brings about change in behaviours. Would be keen to know more about your findings when in the public domain.

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  3. . Great article David. I’m very new to the area of consumer engagement ( looking at how patients and consumers can impact how medical education can be improved). As a newby are there any key articles and/ or sites you ( or above commenters) can point me to that might be relevant.
    Cheers
    Michele 🙂

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    1. Hi Michele- it goes without saying to continue to read David’s Blogs and if you’re not already on Twitter would recommend that to make some new health & patient connections.

      I’d also suggest you have a look at the website of the Centre for Patient Leadership http://engagementcycle.org/about-us/centre-for-patient-leadership/ which was founded by David Gilbert and Martin Doughty.

      National Voices and the Kings fund would also be good places to see the work that is going on in this field. I am a member of the co-production group of the newly formed Coalition for Collaborative Care ( C4CC) which is looking at personalised healthcare particularly where people, like me, have Long term Conditions.

      So there’s a starter for ten to do some research – hope that helps?

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      1. Thank you very much Christine for spending the time and giving me some pointers. Much appreciated. Michele 🙂

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