1. The patient and carer perspective
Informed and involved
The patient and carer perspective
Elisabeth Davies
Chair
Patient and Carer Network
Welcome the opportunity to join you today.
In thinking about today, I’ve taken a step back, reflecting on the patient journey and thinking about the importance of patient information at each stage of this journey.
Time constraints are such that I won’t go into detail at each stage of the journey so I’m going to focus on sharing some high level thoughts about person-centred information – And in particular what this means for people living with a long term condition.
In doing so I want to briefly draw out the relationship between the informed patient and the engaged patient.
And that’s an issue that the PCN is well placed to discuss: Working within the RCP the Patient and Carer Network is here to ensure that the patient and carer voice is at the centre of all of the RCP's work.  Our aim is to provide opportunities for patients and carers to contribute meaningfully to every stage of decision-making at the RCP, from the creation of projects through to implementation and review.  

2. Cartoon is flippant but it goes to the heart of an obvious point that is nonetheless worth making – the patient and carer view of what constitutes good quality information may differ to the professional view.
If you speak to patients and carers about what information means to them not surprisingly you get a very broad response. When I asked a selection of PCN members here’s an example of the range of points they made:
“Having / feeling ownership of decisions”
“Good communication between me and my HPs – and my HPs and other care providers between themselves”
“Quality assured information at key moments when I need it – sometimes requested, usually anticipated”
“Practical support to enable independent living”
“Peer support”
“Reinforcement and motivational messages – behaviour change”
“Knowing where and how to get support – emotional as well as practical”

3. Person- centred information cycle
Identifying the need
Developing it
Producing it
Distributing it
Information means different things to different patients at different stages of the journey – what this comes down to is an information cycle that needs to mirror the patient journey. We know about person-centred care; we need person-centred information.
This comes down to being able to get the right information in the right way at the right time
This is what our PCN members would say: Identifying the need – find out what I want I to receive, Developing it – don’t ask me to review a near final draft Producing it – ask me about the format and the type of information I want; give me a choice Distributing it – find out when I want to receive it and how and from whom

4. Poor decision quality Best decision quality
Patients:
Unaware of treatment or management options and outcomes
Clinicians:
Unaware of patients’ circumstances and preferences
Best decision quality
Patients:
Bringing experience, personal values, knowledge and preferences
Clinicians:
Bringing best evidence and clinical experience presented clearly and skillfully
Adapted from Foundation for Informed
Medical Decision Making
With thanks to Angela Coulter and Alf Collins
Another way of thinking about this – shows the importance of patients and clinicians coming together; the importance of the partnership.
This is in many ways where the informed patient starts to meet the engaged patient.
This is particularly apparent in those living with a long term condition; and very much in the context of information that enables and supports self-management.

5. Information and self-management
Hours with healthcare professional = 4 hours in a year
Self-management
= 8756 hours in a year
What this shows - People manage their health almost all of the time outside the healthcare setting. They have limited contact with health professionals and not always at the greatest time of need.
Contact is precious time to get information and support - but it also means a lot of information and support has to come outside the healthcare setting.
What does this mean?
Cultural Real choice - based on meaningful information delivered in the right way at the right time.  Not about providing more information. Montgomery quote here:  
“This is almost certainly the most significant medical negligence judgement in 30 years – a momentous decision which will affect the doctor-patient relationship throughout the UK. Doctors will have to discuss with their patients the options that exist in their treatment and advise them about the alternatives and any associated risks”. Fred Tyler, Balfour and Manson, Mrs Montgomery’s lawyer.
Skills This is a different type of conversation which requires new skills on the part of the health professional; skills at different points along the pathway
Co-morbidities
Impact of multi and co morbidities on treatment eg increased choice but increased interactions, side effects etc etc. Implications for information providers including voluntary sector
Future
Increased choice of treatments? Providers of info and support need to keep up – personalised medicine will soon lead to greater demand for personalised information

6. What this means Cultural Skills Co-morbidities Future
Cultural Real choice - based on meaningful information delivered in the right way at the right time.  Not about providing more information. Montgomery quote here:  
“This is almost certainly the most significant medical negligence judgement in 30 years – a momentous decision which will affect the doctor-patient relationship throughout the UK. Doctors will have to discuss with their patients the options that exist in their treatment and advise them about the alternatives and any associated risks”. Fred Tyler, Balfour and Manson, Mrs Montgomery’s lawyer.
Skills This is a different type of conversation which requires new skills on the part of the health professional; skills at different points along the pathway
Co-morbidities
Impact of multi and co morbidities on treatment eg increased choice but increased interactions, side effects etc etc. Implications for information providers including voluntary sector
Future
Increased choice of treatments? Providers of info and support need to keep up – personalised medicine will soon lead to greater demand for personalised information