1. Embedding access to information across patient pathways: landscape and levers

2. Perfect Information Pathway Project
Defining good practice in embedding access to information across patient pathways
Designing a ‘perfect patient information pathway’ based on findings
Testing out the pathway in a clinical setting, for a specific long-term condition
Summarising the policy lessons to emerge from the project, which could be adopted across all long-term conditions, and campaigning for national-level change

3. Growing Policy Commitment
Popularisation of key concepts for care including ‘shared decision-making’, ‘self- management’, ‘patient activation’, ‘patient-centred’ and ‘personalised care planning’
Access to information as the thread running through efforts to make a reality of such concepts within healthcare services
Rising number of people with (often multiple) long-term conditions, and increasing recognition of the need for this group in particular to share in decisions about their care:
Growing public commitment to these concepts, in the policy sphere:
Care Act 2014
NHS Five Year Forward View
NHS Constitution
CQC fundamental standard on ‘person-centred care’
Promotion of patient activation measures (PAMs)
Provide brief overview of some policy statements / developments illustrating commitment to the implementation of the concepts explored above.
This growing public commitment provides the context for the policy environment in which PIF is seeking to drive forward the integration of information into care
Opportunity to embed better access to information

4. Perfect Information Pathway Project
Creating a model with guidance to support the ‘perfect patient information journey’ for people with long-term conditions, seeking to identify and advise on:
What successful access to information looks like
Which practical steps are necessary to embed information access, in a real-life clinical setting
Aimed at providing useful resources for commissioners and professionals, and eventually influencing national policy change

5. Programmes or case studies reviewed
NHS Year of Care Programmes for Person Centred Care, incl NICE Quality Standard for Diabetes
Health Foundations’s MAGIC programme ‘making good decisions in collaboration’
Implementation of Information Prescriptions across cancer services
NHS East of England – ‘Understanding Personal Health Planning: workforce guide to support people with long-term conditions’
Brief Patient Activation Intervention in Community Health Centres, New York, United States
Somerset Community-Based Self-Care Support Service for Adults with Persistent Pain
Brief overview here; as the majority of our work to date and the initial outputs of the project have been more focused on drawing out what good practice looks like on the ground, which I will explore next…

6. Good Practice: National levers
Influencing NICE guidance and other key standards for long-term conditions
Tools such as Patient Activation Measures (PAMs) and accompanying CQUIN schemes
Raising political awareness: Promoting information access as key to realising concepts such as shared decision-making
Brief overview here; as the majority of our work to date and the initial outputs of the project have been more focused on drawing out what good practice looks like on the ground, which I will explore next…

7. Good Practice: Service-level levers
Consideration of information access points
Identifying staff roles in information delivery
Integrating into all plans and team guidelines for care delivery
Involving patients and staff early on in design of content and delivery
Ensuring ‘before and after’ data to measure impact
Creating adaptable template resources for information delivery (e.g. brief decision aids, option grids, decision quality measures)
The points above will be expanded upon and explained in the context of particular good practice examples our research has uncovered so far.

8. Next Steps
Continuing to gather on-the-ground perspectives, recording good practice and challenges: we need your ideas!
Initial good practice summary report
Designing a model for the ‘perfect information pathway’
Testing out the pathway in a clinical setting
Summarising policy lessons and campaigning for national change

9. Questions for Group Discussion
How do you tailor your information resources and services to different points and needs in a patient’s experience with a health condition or illness?
Chaired by Sue, 2.40 – 3.50pm

10. Questions for Group Discussion
How does your organisation work with healthcare providers and services to disseminate and deliver you information resources?
Chaired by Sue, 2.40 – 3.50pm