KPIN Workshop Pre-training Questions

1. 2020 Kidney Involvement/Engagement Experience Survey (Patient and/or Carer’s) Survey

WHAT IS THE SURVEY ABOUT?

Background

We would like to know about your experiences of involvement or engagement with healthcare professionals and organisations, as either a patient or carer.

This survey has been developed by the Kidney Patient Involvement Network (KPIN), a newly formed network of kidney (renal) organisations, charities and individuals committed to developing quality patient and public involvement and engagement (PPI/E); working with patients, carers and healthcare professionals to help improve their quality of life and work.

For further information please see https://kpin.org.uk/about-us/

One of our commitments is to develop and provide an education programme that supports patients and carers to gain the skills needed to have a productive and meaningful experience in their involvement and/or engagement when working with healthcare staff.

We will use the results from this and other patient survey's/questionnaires to custom design a programme centred around patient/carer needs.

Please note:  With the current Coronavirus situation in the UK, we are looking to currently provide 'online' activities only.  Whilst appropriate, informative and helpful information online is an aim of KPIN, offering face to face training will be available once the situation allows it.
 
WHO SHOULD COMPLETE THE SURVEY?

Patient and/or carers who have:
  • direct experience of Chronic Kidney disease
  • in the therapy stages of Advanced Kidney Disease (Pre-Dialysis), Haemodialysis (unit and home), Peritoneal Dialysis or have been transplanted
  • been involved or have a desire to be involved in working with other patients or carers or healthcare professionals on renal projects such as Service Design, Quality Improvement, Research etc.
It does not matter how little or how much involvement you have had.  We are interested in your views.

COMPLETING THE SURVEY

Whilst you can add your details should you wish to, the survey is voluntary and anonymous. It should take no longer than 10 to 15 minutes to complete it.  We will keep the completed surveys for 6 months and then delete them.

BECOMING A MEMBER OF KPIN

We are looking to develop a Kidney Patient Involvement Network 'Membership' with the outline aim of helping to develop a ‘Critical Mass’ of patients, Carers, HCPs and Professionals through;
  • Maintaining a clear and compelling value Network proposition
  • Help define an effective involvement and engagement strategy
  • Help become cultivators and change agents within the Network
  • Provide an infrastructure for people to share data and experiences
  • Facilitate discussion, experimentation and innovation
  • Develop relationships
  • Create opportunities for focused interaction on specific topics e.g. Patient Peer Support
  • Help identify like-minded people
  • Help sustain the Kidney Patient Involvement Network
Members will receive regular KPIN updates.

Should you wish to become a member, either leave your details in 'question 1 or 14' of this survey or email me directly andy.henwood@kpin.org.uk.

 
 

1. You do not need to leave your details therefore staying anonymous. However if you wish to find out about about becoming a member of KPIN, we can use your details to contact you.

Your DETAILS are? *

*
*
*
 

2. Are you a ....?

 

3. What is your AGE? *

 

4. Which race / ethnicity best describes you?

 

5. As a patient "What is your kidney TREATMENT type?"
As a carer "What is the treatment type of the person you are caring for?"

 

6. Do you consider yourself to be a Patient or carer Representative or Advocate?
(Simply put: Do you 'Represent' other patients or carers or do you 'Advocate' on behalf of other patients or carers?) *

 

7. Please describe any current or past 'Patient or Carer' involvement with Health Care Professionals in either Service Design, Delivery, Quality Improvement or Research including your role? (please write none if you have not been involved in any).

 

8. Think about the roles you were involved in, what did/does the work involve. Please tick all that apply?

 

9. What would you like to be able to “LEARN” or do “BETTER” within current or future patient involvement?
(please be as specific as you can)

 

10. Where you have been involved before were you offered any training or support in preparation for these roles (if known)?

If yes, it would be helpful to identify the following?

 

11. The initial forthcoming KPIN 'online 'Zoom' discussion sessions' will discuss outcomes of this survey supported by previous KPIN workshop activities. They will also discuss typical Patient Engagement/Involvement topics to be included in future workshop(s)/training. Do you have any immediate suggestions on topics to be covered?

 

12. We are looking to hold two initial online 2 hour virtual session on the 25th of March 2020 (10am to 12pm and 2pm to 4pm) for experienced patients and carers to practically discuss the outcomes of this Survey. If you consider you have valuable experience and you would be free to attend one of these sessions, please contact Andy at andy.henwood@kpin.org.uk.

Please outline any helpful information below;

 

13. We are looking to run a number of additional Patient/Carer workshops across the country during 2020/21. Please outline the locations you would be prepared to travel to any of the following locations, should you wish to attend one of the workshops (reasonable journey expenses will be paid)?

 

14. Finally, what is the best day(s) for you to attend a workshop (approx 10am to 4pm)?

 

15. Should you wish me to contact you directly (and have not already emailed me), please leave leave your details below. There is also a space for any comments;

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