PARTICIPATION

Co-Production - Experience based design - Patient led services

Asking patients how they would like the service I provide? – Get real!

A short review by Dr Alan Willson, Improvement Science Research Group, Swansea University

 

If you are allergic to buzzwords then all these terms will already have given you a rash. You might reject them in common with every wave of managerialism or political correctness. But, like most new ideas, it is most useful if we take control of it and use it purposefully. Here, we share some thoughts about why more participation could help us, some tools to make it easy and links to colleagues who can share experience. The aim is to move beyond jargon and make it real.

First – what is it?

I am going to use a wide definition of this topic. It can refer to work with whole communities about services in general or individual patients about their options and preferences. To save space, I will use the term Participation.  Sherry Arnstein described a ladder of 8 levels with increasing amounts of participation.

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Although written about town planning, her paper has transferrable messages to other fields: decide on the right level for the setting. The highest level isn’t appropriate for all settings (running an ITU as a people’s republic would be unwise!) but maybe a higher level of participation could deliver benefit. For example, hospitals that have developed effective partnership arrangements with former ITU patients have learned lessons about noise disturbance which has led units to reduce bin clatter and loud conversation: improving patient experience and, maybe, outcomes.

Ideas like co-production fit at levels 6 and 7: why not share the power of decision making to allow patients to make informed choices according to their priorities? (Ruth Dineen, founder of Co-Production Wales, has written a good explanation of coproduction with some more bibliography Ruth Dineen on Co-production).  A wonderful video by Dr Alf Collins describes his use of co-production in transforming his practice as a consultant in chronic pain management. Dr Alf Collins video. (Send this link to your home or phone of your organisation blocks YouTube. )

If you want to read further, a wonderful annotated bibliography containing references has been shared with us by Paul Batalden. (Emma, I have put this at the end but can you place in a linked page?). In Wales, keep an eye out too for the Planned Care Programme where there are descriptions of how participation and a patient activation measure are being taken forward in Welsh healthcare.

Second – are health services good at it?

In short – No. There are some good examples of participation in health services but they are exceptions. A useful paper by Josephine Ocloo and Rachel Matthews (BMJ Qual Saf doi:10.1136/bmjqs-2015-004839) reviews the reasons for our historical reluctance and some solutions. They show how we are particularly bad at involving some groups of service users. So, we should not be surprised if we find it difficult to do it properly or that some of our colleagues need a lot of persuasion. Ocloo and Matthews paper.

If this is your thing, have a look at a short and well written paper which seeks to apply this thinking to patient safety O'Hara at the crossroads.  In short, if we learned how to accommodate patient knowledge, we would work a lot more safely. Being awash with data is no substitute for real knowledge of what happens.

At a recent Health Foundation workshop entitled ‘Coproduction more than just a word”, Professors Zoe Radnor and Paul Batalden presented a challenging and thought provoking account of how we might think about the design and management of public (health) services and the involvement of users.  They argued product (manufacturing)-dominant logic has traditionally shaped the way we deliver and manage public (health) services, instead of a service-dominant logic (SDL) which aims to put the user at the heart of the service.  Typically in manufacturing production and consumption are separated as discrete processes and the ‘customer’ occupies the role of purchaser and consumer. Whereas in services the user is also a co-producer of the service, making the distinction between consumerism and coproduction.  Zoe and colleagues have developed a SERVICE framework in which sustainable business models for a range of public services can be situated, this is currently being tested in healthcare.

A comprehensive report published in 2013 as part of the World Innovation Summit for Health makes the case for patient involvement and provides case studies from across the globe WISH review of patient engagement.

Then there is the “Berwick Report” following the enquiry into Mid-Staffs. Berwick report on mid-Staffs . The authors recommend that “Patients and their carers should be present, powerful and involved at all levels of healthcare organisations from wards to the boards of Trusts. In commenting on the report, Don Berwick says:

 

If mid-Staffs had listened to the patients, listened to the carers or the staff, if someone had said ‘what are they telling us? Put it together’ they would have been on alert, they would have been worried, they would have begun to have some diagnostic work done. Instead the voice of the patient, the voice of the carer, the voice of the staff was muted and eventually more or less ignored.”

Mid-Staffs is not typical of the NHS but a higher level of participation would – in the view of this report – have provided a vital safeguard to avert the crisis developing.

Third - What tools are available?

Good news! There are many places you can find useful tools – many on line and all those listed below are free. Use them in your practice – don’t worry if they are not created locally. On line resources can be exploited to help us with our work.

Health foundation tools. Probably the richest online source of healthcare friendly tools and applications. The Health Foundation site includes theory, explanations, tools and blogs.

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1000 Live Co-pro tools. A description of resources and programmes available in NHS Wales and a link to support and expertise. 1000 Lives have also published three white papers relating to this subject. The most recent is 1000 Lives Listening White Paper.

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Co-creating health in ABMU. A short but inspiring video explains the principles: ABMU video

Training and support are available locally. See the attached poster for details or contact   David Murphy, Assistant Director of Therapies and Health Science David.Murphy@wales.nhs.uk

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Kings Fund EBD Tools. This is one of two toolkits about Experience Based Design which are available online. It is based on practical work at Guys, St Thomas’ and Kings College. Everything is here to help you work with patients and staff, apply their knowledge and measure the results. More recently the Kings Fund has released Patients as partners. Don’t start any significant joint working until you have checked this out – maybe you may even consider their leadership programme in partnership with a patient leader.

 

NIII EBD tools. Similar to the Kings Fund tools but slightly harder to access given the demise of the Institute. Still worth a look. n.b. you seem to be able to get tools free from this address whereas they are chargeable if you use another site.

AHRQ tools includes a wealth of tools. They feel and sound quite US focussed but you may find just what you are looking for here – let us know!

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Finally – who is doing what in South West Wales?