Development of Shared Decision Making

Interventions in Primary Care for Adults

with Depression

15th March 2013

Darren Flynn Senior Research Associate

Institute of Health and Society (Decision Making and Organisation of Care

Group), Newcastle University

Tel: 0191 222 5415

Email: darren.flynn@ncl.ac.uk

Research Team

• Richard Thomson (Professor of Epidemiology & Public Health), IHS, Newcastle University

• Jan Scott (Professor of Psychological Medicine), Institute of Neuroscience, Newcastle University

• Mary-Jane Tacchi (Consultant Psychiatrist), Crisis Assessment & Treatment Service, NTW Foundation Trust

• Vera Araujo-Soares (Senior Lecturer in Health Psychology), IHS, Newcastle University

• Dave Tomson (GP), Collingwood Health Group, North Shields

• Luke Vale (Health Foundation Chair in Health Economics, Deputy Director), IHS, Newcastle University

• Jane Noble (Mental Health Service User Development Worker, North Tyneside PCT)

• Sandra Hutton (Patient Involvement Lead, Patient and Carer Engagement Team, NTW Foundation Trust

• Alison Chalmers (FMS, Engagement Support Co-ordinator)

• Alison Etherington (Administrative support)

What is Shared Decision Making (SDM)? SDM is a process in which people are:

1. involved as active partners with clinicians

2. in clarifying acceptable options for treatment

3. and choosing a preferred option that is consistent with their preferences and values

When is SDM Appropriate?

• ‘preference-sensitive’ healthcare decisions:

– More than one reasonable treatment option – Options have different ‘trade-offs’ between possible benefits, risk of

adverse effects and consequences

• When people with long-term conditions want to plan their care, adopt healthier lifestyles, and enhance their ability to self-manage their condition

• For the great majority of mental health

conditions

There are real choices between therapeutic

options, which are sensitive to individuals’

preferences and values in many ways:

• varying individual preferences for different medical

or psychological interventions (and self-

management strategies)

• different trade-offs between potential benefits,

unwanted side effects and consequences, which

individuals are likely to value differently

– e.g., several types of medication can help reduce anxiety, although there are

different trade-offs with risks of unwanted side-effects of different medications

• Only a third (34%) of service users who responded

to a survey were “definitely” involved as much as

they wanted to be in decisions about their care and

treatment

– Mental Health Acute Inpatient Service Users Survey

2009

• Around a quarter of service users who were

prescribed new medication said that they were not

told about the possible side effects.

– Community Mental Health Survey 2011

Potential Benefits of SDM in Mental Health

• Supporting empowerment and autonomy

• Enhancing adherence to treatment/care plans

SDM is a core component of service improvement

agenda for mental health

• New Horizons

• No Health Without Mental Health

• NICE Quality Statements: Service User Experience in Adult Mental Health

Compared with physical healthcare - little research on

SDM in mental health

More research needed to inform how best to support

implementation of SDM in mental healthcare

Developing Shared Decision Making Interventions in

Primary Care for Adults with Depression

Overview of Development Work

Development work packages (supported by joint RCF from NTW

and NHS North of Tyne) to inform a future research application to

the NIHR:

Focus on development and evaluation of interventions to:

1. enhance the capability/willingness of adults with depression, their

carers and clinicians to engage in SDM in primary care settings

2. support the implementation of SDM within the primary care pathway

for adults with depression that impact positively on recovery-focused

outcomes

• and are cost-effective to implement

Research Application to the NIHR

Exploratory Work

(engagement exercise with

public, service users, carers

and clinicians)

Public, Service

User/Carer Involvement

Strategy

Development of educational

DVD (and supplementary

material)

Scoping Review of Secondary Research

Advisory and reference

group

Development

Work Packages

• Scoping review of secondary research

– to develop a draft classification system (taxonomy) of

interventions targeting engagement of adults with depression in

decision making about available therapeutic options with clinicians

(once it has been established that presenting symptoms are

depression)

– Inform a protocol/search strategy for a review of primary research

evidence (future application for funding)

• Convening an advisory and reference group

– clinicians, representatives from service user/carer organisations,

service commissioners and other experts (national and

international)

– challenge forum for the preparatory work and critique application

to NIHR

Adult with Suspected Depression

1. Step one: Assessment and advice - development of a shared understanding of assessment, symptoms / severity / other co-

existing mental/physical health conditions, prior to discussing available therapeutic options

2. Initial Management

Step two: Therapeutic Options

• Supported self-management • choice of self-management option

• Low-intensity psychosocial interventions o Choice of LIPI; e.g., Guided self-help - based on Cognitive

Behavioural Therapy (CBT)

• Medication (where indicated) • choice of medication

Step three: Therapeutic Options

• Medication • choice of medication

• High-intensity psychosocial interventions o Choice of HIPI; e.g., CBT (individual or group-based)

• Combined medication and selected high-

intensity psychosocial interventions

Complex and severe depression;

significant risk of

self-harm / suicide

5. Step four: referral to secondary

care / specialist mental health

services (approx.’ 10% of people)

3. what are the therapeutic

options if initial

management is not

helping?

Access Point (GP, IAPT self-

referral, community)

4. what are the therapeutic

options if initial

management is helping?

Mild

to

mo

dera

te d

ep

ressio

n;

mo

dera

te a

nd

severe

dep

ressio

n (

ap

pro

x.’ 9

0%

of

peo

ple

)

NB: this is an ‘ideal’ primary care pathway based on NICE Guidelines

Decision points across the

care pathway (GP and IAPT

services), which are sensitive

to the preferences and values

of primary care service

users/carers

• Discussion Questions

– What are the key issues at each decision point across the

primary care pathway for depression?

– Where would involving primary care service users/carers

in decision making across the care pathway for

depression make a difference to recovery?

– What changes are needed to the primary care pathway for

depression to support shared decision making?

– What training / support would be needed for clinicians and

service users/carers in primary care to participate in

shared decision making?

– What order that should we develop interventions to

support shared decision making at specific points across

the primary care pathway?

Advisory and Steering Group

Public, Service User / Carer Steering Group

Service User Representatives

(supported by DF/AC)

Steering Group

Members

Research Team

OUTPUTS

Public, Service User / Carer

Steering Group

o Aims and objectives

o Meetings (location, frequency, ground

rules)

o Ways of working / support needs

o Training and development

o Reimbursement / expenses

• We are seeking

expressions of interest

Development of educational

DVD and other materials

Emergent roles: o Co-applicant on research application

to NIHR

o Service-user/carer researcher(s) /

trainer(s)

Public, Service User/Carer Involvement Strategy

Educational DVD and Supplementary Materials

• Short educational DVD (10 mins) and supplementary materials (posters and

leaflets) ideally public, service-user / carer led

• We are actively seeking expressions of interest

Aim:

• to inform the public / primary mental health service users with depression, their carers,

healthcare providers and commissioners on the existence, guiding principles and

potential benefits of implementing SDM in primary mental health care

• DVD could feature primary care mental health service user/carer narratives

• facilitating the development of knowledge and understanding on how they make

choices based on what is important to them - i.e., their preferences and values

Example of themes that could be included in the DVD:

• What is SDM, why it is important and what are the potential benefits?

• Importance of involving carers in the SDM process

• Information needs, including what is important to them when weighing up the pros and

cons of the available therapeutic options