Information Prescriptions: the answer we were looking for?

Northumbria Healthcare NHS Foundation Trust & Parkinson’s Disease Society Pilot

Kate Greenwell – Information Prescriptions Project Manager

Overview

1. Background to Information Prescriptions

2. Northumbria Healthcare NHS Foundation Trust Pilot

3. Key findings from patients, carers and health professionals

4. Our next steps

5. National support from Department of Health

1. To understand what is wrong2. To gain a realistic idea of prognosis3. To make the most of consultations4. To understand the processes and likely outcomes of possible tests

and treatments5. To assist in self-care6. To learn about available services and sources of help7. To provide reassurance and help to cope8. To help others understand9. To legitimise help-seeking and concerns10. To identify further information and self-help groups11. To identify the ‘best’ healthcare providers.

Source: Coulter, Entwistle & Gilbert (1998)

Why is patient information important?

Only 1 in 4 of discharged patients were able to list all of his or her discharge medications, and only 1 in 7 was able to describe the common side effects of all of his or her medications. 6 out of 10 discharged patients were unable to

name their diagnoses (Mayo Foundation for Medical Education and Research, 2005)

GPs do not systematically or proactively give patients information on accessing local services. The findings also showed a lack of co-ordination between health and social care across organisational boundaries (Coulter, A, 2007, Accessing Information About Health and Social Care Services, Picker Institute Europe)

The problem

86% of people said that being given more information about their health and condition would give them more control over their health and wellbeing (Department of Health, 2006, Your Health, Your Care, Your Say)

• Building on the best: choice, responsiveness and equity (2003)• Better information, Better Choice, Better Care (2004)• Our Health, Our Care, Our Say: a new direction for community

services (2006)• Your Health, Your Care, Your Say (2006)• Our NHS, Our Future: NHS Next Stage Review (2007)• The NHS Constitution (2008)

Patient information is a central theme to recent DH policies:

InformationPrescriptions

the right information at the right timethe right information at the right time

The DH vision is that everyone with a long-term condition or social care need will be guided to reliable and relevant sources of information to allow them to feel more in control, better able to manage their condition and engage with the healthcare system and to stay independent.

Information prescriptions will become a routine part of care – just like prescriptions for medicines.

Informed and empowered

people

...tailored to help people with long term conditions and carers receive information they need to manage the condition.

…signposts to sources of information about health and care – eg Tel nos, website addresses.

…will be given to people by their health and social care professionals

Information prescriptions

Cancer (general): Durham

Head, neck, lung and gynaecological cancer: Nottingham

Young people’s mental health: South Staffordshire

People over 65 mental health: Cambridgeshire

Dementia: Isle of Wight

Alzheimer’s dementia: Suffolk

Neural and physical conditions: North Tyneside

Sight loss: Leeds

Dementia: Leeds

Diabetes: Darlington

Adult mental health outreach: South Essex

Whole systems approach: Manchester

Depression, anxiety: Doncaster

Deaf and hard of hearing: Oxford

Cystic Fibrosis: Birmingham

Non-surgical cancer treatment: Birmingham

Psychosis/Schizophrenia, Bi-polar/Manic depression: London

Paediatric pharmacy: London

Complex cancer care: London

Diabetes, Asthma, Arthritis: London

IP pilot sites

The process for information prescriptions

Information Content

Identify sources of information people

people need to access

AccessMade available through range of

channels

PrescribingA template in an

appropriate format

PersonalisedProcess

Specific to thecondition, place and point on care

pathway

DirectoriesEstablish links to

the content

• Parkinson’s disease is a complex and individualised condition• Northumbria’s coverage • Wide range of health professionals supporting patients and carers• Limited access to IT for both users and health professionals• Limited time during consultations

Information prescriptions: the answer we were looking for?

Needs assessment & scoping

Needs assessment & scoping

Stakeholder eventHealth and social care professional

questionnaire

Service user questionnaire

Local PDS branch forum

Visits to other pilot sites

Key comments from people with Parkinson’s & carers:

• Information should be provided at each stage of their condition • Not just written information – support needed to identify and use

information • Information should be personalised and timely • Information on a wide range of topics (e.g. benefits, coping with

Parkinson’s) – not just medical information• Information should be recorded to allow follow-up by health

professionals

For examples of Information Prescription templates – www.informationprescription.info/resource

DoctorOR

Specialist NurseOR

Allied Health ProfessionalOR

GPOR

Social care professional

IP issued by..

IP issued…assesses info

needs…

Clinical team member

OR

PDS Information & Support Worker

OR

NHS Direct

Face-to-faceOR

By telephone

Information needs assessed

…delivered…IP issued

VerballyOR

By handOR

By postOR

By email

Verbal information

OR

Written information

OR

Audio information

OR

DVD/podcast

OR

Information in different

languages

Information needs assessed

Information delivered

IP recorded…IP issued

In medical notes

AND

In patient outpatient

letterAND

Patient letter

copied to GP

IP issuedInformation

needs assessedInformation delivered

IP recorded IP followed up by clinical team

Service Users

Key findings: Service users

Personalised

Secure

Supportive

Supports verbal

information

Understanding

Reassurance

Coping

Informed choices

Self-careAccess

Health Professionals

Key findings: Health professionals

Benefits

• Emphasise importance of information giving

• Wider range of information topics

• Better identification of problems

• Better use of professionals’ time

Barriers

• Initial resistance

• Benefits?

• Initial concerns over workload

• Concerns over role & professional-patient relationship

• Training needs?

National evaluation findings - http://www.informationprescription.info/finalreport.html

Our next steps:

• Sharing lessons learnt

• Information strategy group

• Information centre

• IT solutions

• Bibliotherapy (i.e. self help books on prescription)

Recommendations for local implementation:

• Engaging clinical teams

• User involvement

• Partnership working

• Use resources available

National Support available for local implementation

National support for local implementationNational support for local implementation

Information quality assurance: information accreditation scheme

Information quality assurance: information accreditation scheme

Information systems: NHS

Choices (www.nhs.uk)

Information systems: NHS

Choices (www.nhs.uk)

Workforce: NHS Employers

Workforce: NHS Employers

Taking forward local Implementation

Taking forward local Implementation

Online resource pack

www.informationprescription.info/resource

Online resource pack

www.informationprescription.info/resource

Information Prescriptions: the answer we were looking for?

Northumbria Healthcare NHS Foundation Trust & Parkinson’s Disease Society Pilot

Kate Greenwell – Information Prescriptions Project Manager