This document discusses patient involvement in developing information leaflets. It defines patient involvement as enabling people to be actively involved in issues concerning them and decisions affecting their lives. Involving patients demonstrates their unique perspectives, values their expertise, and empowers them. It also ensures resources are relevant and improves relationships, efficiency, and public perception of services. Challenges include difficulties with the concept, perceived criticism, resources, and data protection. The document describes how one organization previously involved patients through workshops and reviews, and how it plans to continue through coalitions.

1. Patient Involvement in the
Development of Information
Leaflets
March 20th 2018
Deirdre Shanagher

2. Involvement:
• A process by which people are enabled to become
actively and genuinely involved in defining the issues of
concern to them, in making decisions about factors that
affect their lives, in formulating and implementing polices,
in planning, developing and delivering services and in
taking action to achieve change…’ (HSE, 2011)

3. Patient involvement:
• Demonstrates the value and unique voice of people
• Values patients as the real experts in understanding their
unique journey
• Empowers patients

4. Patient involvement:
• Benefits:
• Ensures resources are informed, relevant, appropriate
and targeted
• Improves relationships and increases trust
• Enhances efficiency – more joined up approaches to
working
• Improves public perception and confidence in services
• Enhances understanding of the links between health,
lifestyle and the circumstances in which people live
their lives.
(HSE, 2011)

5. The Challenges:
• It’s a confusing concept
• Threat of perceived criticism
• Resources
• Don’t know how to
• Vulnerable groups
• Data Protection
• Daunting for people
(Scottish govt, 2007)

6. Patient involvement:
• Public Patient
Involvement
Framework
being launched
tomorrow

7. In IHF…

8. How we’ve done it in the past:

9. How we’ve done it more
recently:
• Collaborative process
• 7 people with COPD, 3 family carers and 3 facilitators
• Workshops and homework
• Process of exploration, shared understanding and shared
decision making.

10. How we’ve done it more
recently:
• Consultation
• Review

11. How we’ve done it more
recently:
• Launch

12. How we’ve done it more
recently:
• Collaborative process building on prior work
• Workshops
• Consultation
• Review

13. How we’ve done it more
recently:
• Launch

14. Going Forward:
• Coalition
• ADMA 2015
• HSE quality
Improvement Division

15. Thanks for listening….
Email: Deirdre.shanagher@hospicefoundation.ie