Patient experience and Co-Creation in Health

Co-creating patient experience in health, pharma and wellbeing

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When citizens co-design healthcare services – the case of Participle in the UK

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By Kate Bagley, Participle

Participle is an amazing non-profit organization that contributes in a very interesting way to patient centeredness and to better healthcare services in the British National Healthcare System (NHS) by using –as the name suggests- participation as one of the main tools. Participle’s projects have a very interesting impact in terms of health, relationships and communities. Participle has contributed to quality of life of elderly by reinforcing their social ties and building up new social networks (real ones, not virtual) or has contributed to local employment and entrepreneuring opportunities for the youth. Participation, or co-creation, as it is used to avoid the social implications of the term, is a key tool in service design and success.

We have invited Kate Bagley to answer some questions about participle, but she has done it so well, that we have let her answers in form of an article. Thank you very much, Kate.

Kate Bagley, content manager Participle

Kate Bagley, content manager Participle

Hi, I’m Kate Bagley, Campaigns and Content Manager for Participle. I run the Relational Welfare blog and @weareparticiple. I work helping to spread our message about how we want public services to work in the UK. Due to the nature of my job, I get to see our work across the range of our projects, so I have a bird’s eye view of what Participle is doing. Hopefully that will help me as I try to answer your questions!

What is exactly Participle and what is its contribution to healthcare?
Participle is a social enterprise which focuses on service design. We want to help create a welfare state fit for the 21st century. Our services are prototypes for the kinds of services we want to see making up this new welfare state.

One of our guiding principles is that we want our services to help people build up their own capabilities – what they are able to be and to do. The concept is similar to the old saying: “Give a man a fish and you feed him for a day; teach a man to fish and you feed him for life.” Out of all the different human capabilities, we believe the most important is the ability to form relationships and make human connections. Everything we do has human relationships at the heart. We call this “Relational Welfare“.

In the UK, we have a lot of affection and pride for our National Healthcare Service. But because it was designed to handle acute health problems (like a broken leg), it is not very good at handling long-term health problems with lots of complexity (like diabetes or obesity). Nowadays, we are seeing more health issues associated with old age or “lifestyle diseases”. We have created a prototype health service, Wellogram, which was built to handle these types of health concerns. (More on this below).

What makes Participle different?
There are many things that make us unique, but what most people say is that we have a good blend of practical experience on the ground delivering services combined with a big, high level ambition: reforming the welfare state.

As far as I am aware, we are also the only organisation in the UK to be measuring how much our services are helping people to boost their capabilities. (If you know of any others, please send them to me. We would love to compare notes.) Our capabilities measurement tools are in the earliest stages, but we hope that one day, they will change the face of impact measurement. As of right now we will be looking for service designers and people who would make good ‘relational workersin the coming months. A ‘relational worker’ basically, it is someone who is a frontline service worker who is good at building relationships with the people they are trying to help.

The Circle Movement  A membership organisation for older people, which takes care of everyday worries via a strong social network

The Circle Movement
A membership organisation for older people, which takes care of everyday worries via a strong social network

Why do you see yourselves as heirs of Lord Beveridge and what is Beveridge 4.0?
As you may know, William Beveridge is one of the architects of the welfare state in the UK. He published his most influential report in 1942, which led to the founding of the National Health Service. But towards the end of his life, he realised that he had made a mistake. He published a third report in 1948 voicing his concerns that he had forgotten to include the power of citizens to contribute to and shape services. Our mission statement, which we call Beveridge 4.0, builds on this idea and asks for 5 important shifts in the way we think about public services. They are:

  • from meeting needs to growing capabilities
  • from targeted services to services that are open to all
  • from a focus on finances to a focus on resources
  • from services delivered from centralised institutions to services delivered from distributed networks 
  • from supporting individuals to supporting whole social networks

Why is co-creation so important for Participle? Is there a difference in results with or without patient co-creation?
Co-creation is an important part of our services, all the way through. We would not attempt to create a service, or even research the problem being addressed, without first spending time and getting to know the people affected by the issue. All of our proposed solutions are inspired by what they tell us, and tested by them. As our services grow and develop, they are constantly shaped by the members that use them. We want people who use our services to feel that they own them, and that the service would not be as good without them being a part of it. It is a type of constant co-creation. We wouldn’t want it any other way.

The Participle process

The Participle process

What projects in the health care sector are you most proud of and why?
Our prototype health service is called Wellogram. It helps people take control of their health and stick to healthy habits. We’re open to anyone who wants to use the service, but most of the people we see are struggling to manage a long term or lifestyle disease. In the UK, doctors have less than 10 minutes per patient to resolve the problem. But we know that if you want to help someone change their behaviour, you need to get to know what’s important to them, and what is triggering their unhealthy habits. With Wellogram, your GP refers you to a Guide, who will sit with you for 30-60 minutes as often as you wish to see them (typically every two weeks). The Guide doesn’t give you advice; instead they help you figure out a strategy for achieving the health goals you want.

This service is still in the prototype phase and only serves South London, but we have seen very promising results so far. Sixty-four percent of our members say they’re better able to manage their health, 75% have lost weight, and 72% say they’ve increased their ability to engage with their local community.

What is the real impact of your projects?
We aim for all of our projects to grow people’s capabilities, especially in the area of relationship building.

As I mentioned above, we are developing a tool to measure how effective we are at this. We are using it in our work right now, to test and refine it. We are pragmatic, so we also measure more traditional outcomes like blood pressure or cost savings, for example. You can see the impact our projects are making, and read detailed reports on their progress, on our website.

Is there a job market for people specialist in patient engament, patient co-creation or healthservice design in the UK? How does this market look like and what kind of professionals work there? Do you think there will be one in Spain one day?
It’s hard to say. Although we are asking for a more relational welfare state, we’re not sure yet exactly what role these ‘relational workers’ will play. Will the relational aspects of services be taken care of by people who specialise in doing only that, or will everyone who provides these services need to work relationally? Either way, we think relational workers will play a vital role in the future welfare state.

Autor: Carlos Bezos Daleske

Siento curiosidad por todo lo relacionado con personas y organizaciones, especialmente en salud. Me gusta trabajar con personas y con su capacidad de innovación y co-creación. www.iexp.es I feel very curious about everything related to people and organizations, especially in healthcare. I enjoy working with people and their ability to innovate and co-create. www.iexp.es

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