16. What next for your EBCD project?

Comments: 5

This section offers some tips on how to sustain the progress and spread the improvements to patient experiences made through experience-based co-design (EBCD).

Sustaining and spreading improvements to patient experiences will help maximise the effectiveness, and value for money, of EBCD. Once your EBCD project has identified and implemented improvements, it is good practice to map and examine them in terms of their sustainability at a later period. Positive findings will provide useful evidence for you to use in proposals for future EBCD work.

Even at the design stage, it is helpful to consider sustainability as an issue. But in a constantly changing health service, it is not always possible to guarantee that a positive intervention will remain the ‘right’ way to do something if other circumstances change. However, because the changes that arise from EBCD are often very simple and practical, many services have found that their changes have been sustained. And EBCD has an impact on people’s ethos and mindset, reconnecting them with the values of patient-centred care and encouraging organisations to involve patients in service design as a matter of course. This shift accompanies people throughout their working lives.

A key ingredient in sustaining change is continuing to keep staff engaged, using the language and values that motivate them most (see Sections 3, Making the case for the project and 6, Recruiting and interviewing staff). Another is to align the focus of an EBCD project with other drivers within the organisation, to increase the chance of support and staff buy-in, and to share resources.

Key points

  • Make sure that all staff involved have a shared understanding of the nature of collaborative decision-making and what is necessary – or ‘appropriate’ – for patients.
  • Put in place quality-improvement staff who can sustain ongoing and trusted working relationships with clinical staff.
  • Make sure ward managers and ward-based staff are engaged in discussion about co-design priorities and work. Service matrons, in particular are crucial in driving the work forward.
  • Make sure the interventions are tailored to the changing needs and priorities of  clinical staff and patients alike.
  • Ensure that the improvements take into account the particular dynamics and challenges of inter-professional team working.
  • Improvements must have the active support of senior managers, including clinical leaders, and the organisation as a whole.
  • Make sure the improvement initiatives are aligned with local quality-improvement work in other services.

We hope that this toolkit has given you the inspiration to work with patients to improve your health service, as well as the necessary practical guidance to run a successful project.

There is a range of other resources available that could help you set up and run a successful project using experience-based co-design. See our  evidence and further reading around experience-based co-design for more details. The Point of Care Foundation also runs a co-design training course, based on this toolkit. For more details, see The Point of Care Foundation website.

We have set up an EBCD LinkedIn group for people to share experiences of EBCD - either as a member of staff or a patient. If you have specific questions about the approach, or would like an informal conversation about putting it in to practice, or are just interested to find out more, please join the group.

View the EBCD case studies.

Let us know what you think

We’d love to hear what you think about the EBCD approach, as well as your specific comments on our toolkit. Let us know what you have found useful, or what you think is missing by leaving a comment below or on the EBCD LinkedIn group.

You can also find out more about The King’s Fund’s work on patient-centred care and the Point of Care Foundation – a new charity set up to improve the experience of health care for patients and staff.

Comments

#983 Dr Anita Bamfor...
Head of Nursing
AUT University

I love the work you have undertaken and want to congratulate you on this initiative. Thanks for sharing your experience. I work one day a week in a district health board undertaking research and we hope to do a similar study We can learn so much from your powerful experience.
Kind regards
Anita

#984 Dr Dale Edgar
Clinical Research Manager
Burn Service of WA

I hope that we can find the resources to run this systematic approach to improved patient care and empowerment. Cheers and thank you, Dale

#985 Ellen Shata
Community Heart failure Nurse
City and Hackney

Thank you for sharing this tool.I hope to get funding to apply it within the community services.

#986 Roger Moss
Consultant Anaesthetist
St Helens & Knowsley NHS Trust

Am very interested in improving patient experience particularly during inpatient stay. Am particularly keen to identify and improve simple problems (organisational and anaesthetia related) which might enhance our patients stay.

#505916 Neil Licht
co founder
This Is What I Want-a medical directive that tells your loved ones and care givers precisely what you want or dont want for medical care steps

Readers, we need your help, opinion on how to get traction for something That we all need regarding our medical care:

– The ability for us all to clearly specify and tell our loved ones, caregivers, medical people what we want and don’t want for medical treatment steps in treating a scary medical condition, emergencies and for end of life treatment steps.

We plan for everything to try and be sure out family and loved ones are protected and provided for but we don't plan for easing their pain, emotional pressure and angst when a threatening medical diagnosis or emergency or even end of life issue suddenly happens -WHY NOT?

We need to add this to our planning

There is a tool for doing exactly that that we all can easily use and we want to get it known and used:

Ø We want to make this tool ( This is what I want™ ) become known because our very specific “This is what I want” part of what guides our medical treatment is often missing from a medical proxy and yet, it’s what is actually needed to undo/prevent the agita, angst and burden that a medical health care proxy or loved one carries under those pressurize decision-making times. It also removes the terrible guilt that goes with “I hope I made the right decision”.

Ø Because life can literally change in an instant and sometimes we can’t actually speak to tell our caregivers or loved ones what steps we want and don’t want taken for medical treatment, we want to arm us, our loved ones, our medical care folks with our personal explicit clearly communicated wishes regarding care steps so “pulling out all the stops” does not become the default.

This is also quite important in the end of life journey and treatment so artificial unwanted life-prolonging steps don’t happen.

Ø We want to gain traction for and use of This is what I want™ so much like a driver’s license that we all apply for and get as an “enabling” tool for driving, our very simple checkbox tool becomes our health care wishes/directive steps “driver’s license” that we can all have and get used as our own specific health care path enabling tool.

Here’s the site: http://www.thisiswhatiwant.info. Please take a look at it and if you can, suggest the right target audiences to court. Please pass it along and also, please give us some feedback on how you think we can

 gain traction and usage
 reach the “right” people of “influence” to see regarding this idea, tool adoption, usage

Thanks so much for your help, Neil

Neil Licht and Ann E Johnston co-founders, This Is What I Want

p: (978) 267-7056
e: mailto:Hello@thisiswhatiwant.info
a: 12 Taha Drive Shrewsbury MA 01545
w: http://www.thisiswhatiwant.info


Readers, we need your help, opinion on how to get traction for something That we all need regarding our medical care:

– The ability for people to clearly specify and tell our loved ones, caregivers, medical people what we want and don’t want for medical treatment steps in emergencies and for end of life treatment steps.

We plan for everything to try and be sure out family and loved ones are protected and provided for but we don't plan for easing their pain, emotional pressure and angst when a threatening medical diagnosis or emergency or even end of life issue suddenly happens -WHY NOT?

There is a tool for doing exactly that that we all can easily use and we want to get it known and used:

Ø We want to make this tool ( This is what I want™ ) become known because our very specific “This is what I want” part of what guides our medical treatment is often missing from a medical proxy and yet, it’s what is actually needed to undo/prevent the agita, angst and burden that a medical health care proxy or loved one carries under those pressurize decision-making times. It also removes the terrible guilt that goes with “I hope I made the right decision”.

Ø Because life can literally change in an instant and sometimes we can’t actually speak to tell our caregivers or loved ones what steps we want and don’t want taken for medical treatment, we want to arm us, our loved ones, our medical care folks with our personal explicit clearly communicated wishes regarding care steps so “pulling out all the stops” does not become the default.

This is also quite important in the end of life journey and treatment so artificial unwanted life-prolonging steps don’t happen.

Ø We want to gain traction for and use of This is what I want™ so much like a driver’s license that we all apply for and get as an “enabling” tool for driving, our very simple checkbox tool becomes our health care wishes/directive steps “driver’s license” that we can all have and get used as our own specific health care path enabling tool.

Here’s the site: http://www.thisiswhatiwant.info. Please take a look at it and if you can, suggest the right target audiences to court. Please pass it along and also, please give us some feedback on how you think we can

 gain traction and usage
 reach the “right” people of “influence” to see regarding this idea, tool adoption, usage

Thanks so much for your help, Neil

Neil Licht and Ann E Johnston co-founders, This Is What I Want

p: (978) 267-7056
e: Hello@thisiswhatiwant.info
a: 12 Taha Drive Shrewsbury MA 01545
w: http://www.thisiswhatiwant.info


Readers, we need your help, opinion on how to get traction for something That we all need regarding our medical care:

– The ability for people to clearly specify and tell our loved ones, caregivers, medical people what we want and don’t want for medical treatment steps in emergencies and for end of life treatment steps.

We created a tool for doing exactly that that we all can easily use and we want to get it known and used:

Ø We want to make this tool ( This is what I want™ ) become known because our very specific “This is what I want” part of what guides our medical treatment is often missing from a medical proxy and yet, it’s what is actually needed to undo/prevent the agita, angst and burden that a medical health care proxy or loved one carries under those pressurize decision-making times. It also removes the terrible guilt that goes with “I hope I made the right decision”.

Ø Because life can literally change in an instant and sometimes we can’t actually speak to tell our caregivers or loved ones what steps we want and don’t want taken for medical treatment, we want to arm us, our loved ones, our medical care folks with our personal explicit clearly communicated wishes regarding care steps so “pulling out all the stops” does not become the default.

This is also quite important in the end of life journey and treatment so artificial unwanted life-prolonging steps don’t happen.

Ø We want to gain traction for and use of This is what I want™ so much like a driver’s license that we all apply for and get as an “enabling” tool for driving, our very simple checkbox tool becomes our health care wishes/directive steps “driver’s license” that we can all have and get used as our own specific health care path enabling tool.

Here’s the site: http://www.thisiswhatiwant.info. Please take a look at it and if you can, suggest the right target audiences to court. Please pass it along and also, please give us some feedback on how you think we can

 gain traction and usage
 reach the “right” people of “influence” to see regarding this idea, tool adoption, usage

Thanks so much for your help, Neil

Neil Licht and Ann E Johnston co-founders, This Is What I Want

p: (978) 267-7056
e: Hello@thisiswhatiwant.info
a: 12 Taha Drive Shrewsbury MA 01545
w: http://www.thisiswhatiwant.info


• Steve MessineoX


• Steve, AJ and I would love to have your help and insights re getting traction for TIWIW. Thanks. I can talk with you for sure BUT if in person, Snow may get in the way 1-508-481-8567. info@how2acquirecustomersonline.com

On 01/25/15 3:40 AM, Steve Messineo wrote:
--------------------
Hey Neil,

This looks great! Glad to see you have partnered with Ann to get this off of the ground. Love the website.

I have some ideas for you guys that I would love to share with you, but I also have a few questions first. Do you have time to chat this week, say Tuesday at 10:30 or between 2 and 4pm? Let me know.

Look forward to hearing from you and hope you have a great deal of success with this.

Steve

On 01/24/15 9:12 PM, Neil Licht - HereWeAre wrote:
--------------------
Fellow network members, we need your help, opinion on how to get traction for something That we all need regarding our medical care:

– The ability for people to clearly specify and tell our loved ones, caregivers, medical people what we want and don’t want for medical treatment steps in emergencies and for end of life treatment steps.

We created a tool for doing exactly that that we all can easily use and we want to get it known and used:

Ø We want to make this tool ( This is what I want™ ) become known because our very specific “This is what I want” part of what guides our medical treatment is often missing from a medical proxy and yet, it’s what is actually needed to undo/prevent the agita, angst and burden that a medical health care proxy or loved one carries under those pressurize decision-making times. It also removes the terrible guilt that goes with “I hope I made the right decision”.

Ø Because life can literally change in an instant and sometimes we can’t actually speak to tell our caregivers or loved ones what steps we want and don’t want taken for medical treatment, we want to arm us, our loved ones, our medical care folks with our personal explicit clearly communicated wishes regarding care steps so “pulling out all the stops” does not become the default.

This is also quite important in the end of life journey and treatment so artificial unwanted life-prolonging steps don’t happen.

Ø We want to gain traction for and use of This is what I want™ so much like a driver’s license that we all apply for and get as an “enabling” tool for driving, our very simple checkbox tool becomes our health care wishes/directive steps “driver’s license” that we can all have and get used as our own specific health care path enabling tool.

Here’s the site: http://www.thisiswhatiwant.info. Please take a look at it and if you can, suggest the right target audiences to court. Please pass it along and also, please give us some feedback on how you think we can

 gain traction and usage
 reach the “right” people of “influence” to see regarding this idea, tool adoption, usage

Thanks so much for your help, Neil

Neil Licht and Ann E Johnston co-founders, This Is What I Want

p: (978) 267-7056
e: Hello@thisiswhatiwant.info
a: 12 Taha Drive Shrewsbury MA 01545
w: http://www.thisiswhatiwant.info

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