Transcript Kings bureau Kings bureau

INTRODUCTION TO ADDICTION SCIENCE
AND THEORY
SERVICE USER ENGAGEMENT WORKSHOP
Addictions Department
DR JO NEALE
LEARNING OUTCOMES
By the end of this workshop, you will be able to:
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Reflect critically on the meaning of service user engagement and
appreciate its diverse forms
2. Identify the potential benefits and challenges of engaging service
users in the provision and delivery of drug and alcohol treatment
3. Identify ways of engaging service users in research
WORKSHOP OUTLINE
• Part 1: Concepts and terminology (20 mins)
• Part 2: Engaging service users in the provision and delivery of drug
and alcohol treatment (30 mins)
• Part 3: Engaging service users in addiction research (30 mins)
• Part 4: Summary (10 mins)
PART 1: CONCEPTS AND TERMINOLOGY
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(Service) user engagement
(Service) user involvement
(Service) user participation
Patient participation
Patient and public involvement (PPI) ……..
Service user engagement can occur when making policy decisions about
what services should be provided, in planning and designing new
services, and in delivering and evaluating existing services.
AKA “Nothing About Us Without Us”
EXAMPLES INCLUDE
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Users being involved in the policy process
Users contributing to local needs assessments or strategic planning
Users sitting on the committees of drug services
Users working as paid employees or volunteers in drug agencies
Users delivering education and training to other users and professionals
Newsletters voicing users' views
Surveys collating user feedback
Self-help and peer-support groups
Users delivering treatment to each other within therapeutic communities
Users being involved in planning their own treatment
Users contributing to and undertaking research projects
A SHORT HISTORY
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Origins and development have variously been related to:
• Anti-psychiatry movement of the 1960s
• Rise of consumerism
• Emergence of self-advocacy and pressure groups
• Growth of community action
• New Right policies
• Public willingness to question expert knowledge in late modern society
In the 1990s, many UK public services sought to increase service user
engagement and choice by introducing charters
In 2000/01, the NHS committed to being more patient-centred
Today, user involvement is commonplace in a diverse range of health fields,
including the addictions
BUT…
PROBLEMS OF DEFINITION
• What is a service user?
• A patient; a client; a consumer; a customer; a survivor?
• A current service user; an ex-service user?
• A carer; a care manager?
• An individual; a group?
• What is engagement?
• Involvement; participation?
• Information giving; consultation; choice giving; establishing consumer
satisfaction; collaboration; working in partnership; empowering; service
users being in control?
• A pyramid (Poulton, 1999); a ladder (Arnstein, 1969)?
• What is the domain?
• Policy making; service planning; service delivery; personal treatment;
service evaluation; research?
PART 2: ENGAGING USERS IN TREATMENT
• Exercise 1 (small groups):
• List reasons why we might want to engage service users in making
decisions about the provision and delivery of drug and alcohol
treatment
• List reasons why engaging service users in making decisions
about the provision and delivery of drug and alcohol treatment
might be difficult
• List ways we might better engage service users in making
decisions about their own treatment
POTENTIAL BENEFITS
• Likely to
• Improve services by making them more sensitive to service users’
problems and preferences
• Empower individuals by allowing them greater control over their lives,
helping them to build confidence, increasing their self-esteem, initiating
mutual support mechanisms
• A democratic right and an ethical requirement
• Improve treatment satisfaction and self-reported treatment outcomes
• Additional reasons from the group exercise...
POTENTIAL CHALLENGES
• Entrenched policy and practice that fail to react to users’ views
• Limited resources that restrict service providers’ capacity to meet users’
demands
• Professional reluctance/ scepticism
• Power imbalances that mean users’ views are overruled
• Tokenism
• Services users’ unrealistic demands
• Service users too vulnerable to participate
• Lack of service user interest
• Service users’ beliefs that professionals are the experts who know what is
best
• Additional challenges from the group exercise…
STRATEGIES FOR ENGAGING IN TREATMENT
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Treating users with respect
Listening to users’ concerns
Providing a range of treatment options/choices wherever possible
Providing meaningful information (accessible media; briefings on how service
users can voice their concerns; rationale for rules & regulations; realistic
information on timeframes & outcomes)
Revisiting contracts & formal documents as treatment progresses
Facilitating access to other service users to discuss treatment experiences
Establishing & maintaining effective channels of communication with staff
Additional strategies from the group exercise…
Adapted from Fischer et al., 2007
POTENTIAL TREATMENT OUTCOMES
• I.e. Does it work?
• Outcomes are unclear or unknown & hardly ever measurable (Crawford et al.
2002; Rose et al. 2002).
• In one study of 859 drug users, half reported that they had been included in
decisions about the help they had received. Those who felt that they had been
involved were more satisfied with their treatment, had stayed in treatment for
longer, and reported a range of positive subjective and objective drug and lifestyle outcomes. Nonetheless, user involvement had a slightly stronger
association with how users felt about their progress than with actual concrete
improvements in their behaviour and life circumstances. So….
• We cannot conclude that involvement had ‘caused’ positive treatment
outcomes since those who did well may simply have felt more involved
retrospectively. Also, both good treatment outcomes and involvement may
have been caused by other factors, such as highly experienced agency staff or
very motivated clients (Neale et al. 2006).
PART 3: ENGAGING USERS IN RESEARCH
• Exercise 2 (Group brainstorming): Why do it?
• Epistemological: patients and the public have knowledge of their own
illness, disease or health condition that can be of benefit to researchers,
who may not have first-hand experience themselves of the illness, disease
or health condition they are researching
• Moral: patients and the public have the right to be involved in any
publicly-funded research that may affect their health status or the
services that they receive
• Consequentialist: PPI has the potential to improve the quality,
relevance and impact of health research, whilst also improving the
transparency of the process and accountability to the wider community
of the researchers themselves
• Policy: PPI is currently Department of Health and NIHR policy, so
funding often depends on getting PPI right at the grant application stage
http://www.shef.ac.uk/scharr/ppi
LEVELS OF ENGAGEMENT IN RESEARCH
• Consultation
• Researchers seek the views of patients and the public on key
aspects of the research
• Collaboration
• On-going partnership between researchers, patients and the
public throughout the research process
• Public/ patient led
• Patients and public design and undertake the research and
researchers only participate when invited by the patients and
public
http://www.shef.ac.uk/scharr/ppi
DESIGNING A COLLABORATIVE STUDY
• Exercise 3 (small groups)
• Your local drug and alcohol service is introducing a new physical
activity intervention for its clients and has asked you to undertake
an evaluation. The intervention comprises a free 3-month trial in
a nearby gym.
• You want to design a study that involves pre and post intervention
measures of physical fitness; questionnaires; and qualitative
interviews.
• How are you going to work collaboratively with services users in
undertaking this research?
• Feedback from the groups
STRATEGIES FOR COLLABORATIVE RESEARCH
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Not exhaustive….
Being part of a project advisory group
Helping to design the intervention
Commenting on the feasibility of the intervention & study design
Reading the research protocol & writing a lay summary
Commenting on the participant information sheets & consent forms
Helping to develop the interview topic guides & the questionnaires
Recruiting participants
Assisting with data collection
Assisting with analysis/ data interpretation
Contributing to reporting & dissemination
A NEW SERVICE USER RESEARCH GROUP
• Current new venture underway to develop an innovative Service User
Research Group for the Addictions Department
• A key aim is to bring together a group of service users who are
interested in research and want to work collaboratively with
researchers in the Addictions Department at the IOP
• Hopefully, this will have benefits for both the service users and the
researchers
• The group is still forming with a first full meeting planned for late
November 2013
• Already, we have identified a new study to work on collaboratively.
The study is called PROM-AR.
PART 4: SUMMARY
• User engagement has become an important concept in UK health and
social care policy and practice
• However, it is a difficult concept to define
• It can encompass many activities (relating to policy, practice and
research) and many levels of participation (from consultation to
collaboration to control)
• Engaging services users in a meaningful way can be challenging and
time consuming
• But the challenges are not inevitable or insurmountable
• And the potential benefits are many
• General discussion and questions
REFERENCES 1/2
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ESSENTIAL READING
• Rose, D. (2003). Collaborative research between users and professionals: peaks and pitfalls.
Psychiatric Bulletin, 27 (11), 404-406. http://pb.rcpsych.org/content/27/11/404.full
• Fischer, J., Jenkins, N., Bloor, M., Neale, J. and Berney, L. (2007). Drug user involvement in
treatment decisions. York: Joseph Rowntree Foundation.
http://www.jrf.org.uk/sites/files/jrf/2012-drug-user-treatment.pdf
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USEFUL WEBSITES
• http://www.nice.org.uk/getinvolved/
• http://www.ccf.nihr.ac.uk/PPI/Pages/default.aspx
• http://www.shef.ac.uk/scharr/ppi
• http://www.invo.org.uk/
REFERENCES 2/2
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RECOMMENDED READING
• Arnstein, S. R. (1969). A Ladder of Citizen Participation. Journal of the American Institute of
Planners, 35 (4), 216-224.
• Crawford, M. J., Rutter, D., Manley, C., Weaver, T., Bhui, K., Fulop, N. and Tyrer, P. (2002).
Systematic review of involving patients in the planning and development of health care.
British Medical Journal, 325, 1263.
• Evans, J., Rose, D., Flach, C., Csipke, E., Glossop, H., McCrone, P. Craig, T. and Wykes, T.
(2012). VOICE: Developing a new measure of service users' perceptions of inpatient care,
using a participatory methodology. Journal of Mental Health, 21, 1, 57-71.
• Neale, J., Bloor, M., Berney, L. and Fischer, J. (2006). Feel good factor. Druglink,
January/February, 21 (1), 20-21.
• Poulton, B. C. (1999). User involvement in identifying health needs and shaping and
evaluating services: is it being realised? Journal of Advanced Nursing, 30 (6), 1289-1296.
• Rose, D., Thornicroft, G. and Slade, M. (2006). Who decides what evidence is? Developing a
multiple perspectives paradigm in mental health. Acta Psychiatrica Scandinavia, 113 (Suppl
429), 109-114.
• Rose, D., Evans, J., Sweeney, A. and Wykes, T. (2011). A model for developing outcome
measures from the perspectives of mental health service users. International Review of
Psychiatry, 23, 41–46.
• Trivedi, P. and Wykes, T. (2002). From passive subjects to equal partners: qualitative review
of user involvement in research. British Journal of Psychiatry, 181, 468–472.