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Health Technologies: Making Choices, Spending Wisely NHSScotland Event Thursday 21 June 2012 . Health technologies: making choices, spending wisely and public involvement. Public Involvement in making choices and spending wisely. Helen Cadden Chair, Public Involvement Collaborative

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health technologies making choices spending wisely nhsscotland event thursday 21 june 2012
Health Technologies: Making Choices, Spending Wisely NHSScotland Event Thursday 21 June 2012
public involvement in making choices and spending wisely
Public Involvement in making choices and spending wisely

Helen Cadden

Chair, Public Involvement Collaborative

Public Partner, Scottish Medicines Consortium

Member, Scottish Health Council

Richard Norris

Director, Scottish Health Council

overarching medicines and technologies group
Overarching Medicines and Technologies Group

To provide strategic oversight of all assessment and advice for health technologies activity within the organisation.

To facilitate synergy and joint working.

To ensure that Healthcare Improvement Scotland’s health technologies work is aligned with the NHS Scotland Quality Strategy and the Scottish Government’s strategic approach to health technologies.

public involvement collaborative
Public Involvement Collaborative

Brings together patient and public representatives

Representative on Overarching Medicines and Technologies Group

Developing two-way dialogue and identifying public involvement issues – not just about shadowing Overarching Medicines and Technologies Group

Agree areas of good practice in patient and public involvement

Identify any gaps in involvement activities within the current areas of work

public involvement collaborative structure
Public involvement collaborative structure

Overarching Medicines and Technologies Group

Public Involvement Collaborative

Scottish Health Council

Scottish Health Technologies Group

Scottish Medicines Consortium

Scottish Intercollegiate Guidelines Network

Area Drug and Therapeutic Committee Representatives

Scottish Antimicrobial Prescribing Group

Patient and Public Involvement Group

scottish health council
Scottish Health Council

Set up in 2005 to “support, ensure and monitor” patient focus and public involvement in the NHS

14 local offices across Scotland, National Chair and Committee

Developed and implemented the Participation Standard

Part of Healthcare Improvement Scotland and supports wider organisation to meet Duty of User Focus

Publications and case studies on website: http://www.scottishhealthcouncil.org

involving patients in assessing medicines for use in the nhs
Involving patients in assessing medicines for use in the NHS

Scottish Medicines Consortium

Patient and Public Involvement Group ensure that the needs of patients and the wider public are brought into focus during the Scottish Medicines Consortium decision-making process

Integral part of the process - need a perspective from those who have experience of the disease or condition

Three Patient and Public Involvement Group representatives on Scottish Medicines Consortium

Summarise submissions from Patient Interest Groups

scottish medicines consortium evaluation impact of public involvement
Scottish Medicines Consortium Evaluation: Impact of Public Involvement

October 2003 to December 2007, 117 Patient Interest Group submissions presented for 97 new medicines

63% of those submissions supported by a Patient Interest Group were accepted or accepted with restrictions

2008 data

area drug and therapeutic committees
Area Drug and Therapeutic Committees

One in each board – makes local decisions on what medicines are made available

Individual Patient Treatment Requests

Event in March bringing together Committee members from across Scotland

Confusion over different terminology in different boards

Variation in how and if members of public are involved

Variation in understanding about decision making

Agreed that Public Involvement Collaborative would produce Good Practice Toolkit

disinvestment
‘Disinvestment‘

What does it mean?

What questions do we ask the public?

How do we ask the public?

Does the public speak with a single voice?

Do we accept what the public say?

Work with National Institute for health and Clinical Excellence (NICE)

what is sign
What is SIGN?

Scottish Intercollegiate Guidelines Network

Set up in 1993 to produce guidelines for NHSScotland

Initiative from medical Royal Colleges and other professional organisations

SIGN has evolved over time to include other healthcare professionals, patients and lay representatives at all stages of our work

sign methodology
SIGN methodology

Guidelines are developed by multidisciplinary nationally representative groups

A systematic review is undertaken to identify and critically appraise the literature

Recommendations are explicitly linked to the supporting evidence

what is the purpose of patient versions of guidelines
What is the purpose of patient versions of guidelines?

To help patients and carers understand what the latest evidence supports around:

diagnosis, treatment and self-care

to empower patients to participate fully in decisions around management of their condition in discussion with healthcare professionals

highlight for patients where there are areas of uncertainty

developing patient versions with patients and carers
Developing patient versions with patients and carers

Sub-group formed from main clinical guideline

Highlight recommendations where there is a choice for patients or specific actions they may take

Form a question, word an answer

Additional content

Simple language

Draft edited by SIGN

translation of recommendations into plain english
Translation of recommendations into plain English

Recommendation

Patients with diabetes and CKD stages 3-5 should have their haemoglobin checked at least annually. Erythropoiesis stimulating agents should be considered in all patients with anaemia of chronic kidney disease, including those with diabetic kidney disease.

Translation

If you have advanced chronic kidney disease, you must have your haemoglobin levels checked at least once a year. You may get medication to help your body to make red blood cells.

consultation with patients carers and members of the public
Consultation with patients, carers and members of the public

Draft distributed to relevant voluntary groups and members of the SIGN patient network for comment

Draft edited and improved based on comments

ensuring quality of patient versions
Ensuring quality of patient versions

Evidence based

SIGN editorial group – accurate translation of the evidence?

Plain English Campaign

how can patient versions of guidelines help to promote patient choice
How can patient versions of guidelines help to promote patient choice?

Allows priorities to become clear to patients and carers

highlight to patients (and healthcare professionals!) those interventions which have the greatest evidence of benefit

clearly identify treatments for which there is no evidence potentially reducing the use of/demand for unproven therapies

identify lifestyle interventions and ways in which the patient can take steps to manage their condition potentially reducing unnecessary consultations

what have clinicians said about our patient versions
What have clinicians said about our patient versions?

“Give patients clear, unbiased information in relation to therapies available and their effectiveness”

“Using the patient version serves to let people know that there are nationally agreed interventions available”

““The patient version of the ASD guideline is very useful, we aim to give each family a copy. It is reassuring for families to have this information based on the latest evidence. We wouldn’t use anything else”.

what have patient groups said about our patient versions
What have patient groups said about our patient versions?

“it answers questions that people go away with but do not actually ask, plus you can go back to it to recap, plus it even answers questions professionals have when asked a question by a carer or patient which can sometimes meet a ‘oh I don’t know’ and the patient, carer leaving with worry”

“”if we were given these, we would need to see our GP less because we would know how to look after ourselves”

group task
Group Task

Work in groups to identify from the 4 patient versions provided:

An area of clinical uncertainty

An intervention with no evidence

An intervention with no evidence of safety

Some indications for self- care

Some well established effective therapies

An area where the patient has a clear choice to make