Presentation on theme: "‘Improving health and wellbeing through Research’ Preston Football Club 17 th October 2014 Improving health and wellbeing through research – October 2014."— Presentation transcript:
‘Improving health and wellbeing through Research’ Preston Football Club 17 th October 2014 Improving health and wellbeing through research – October 2014
Professor Fiona Lobban & Liz Stokes Professor of Clinical Psychology (Lancaster University) & PPI Representative “Patient & Public Involvement – moving the debate forward” Theme: Capacity Building Improving health and wellbeing through research – October 2014
Patient & Public Involvement (PPI): moving the debate forward
Overview Lots of progress made in public involvement in research BUT – a long way to go We need to move away from “tick box tokenism” towards “evidence based strategy” Can we apply developments in service user involvement in research to clinical service development?
Terminology Here use term “Service users” – Focussing on mental health service setting – Includes relatives – Limitations of this term – Applies to any public / stakeholder groups in research
Tick box tokenism Involve service users – Not clear why – Not clear what role – Not clear who – Not clear if it makes any difference
Progress has been made Grant applications used to be – ‘“Someone” reviewed our proposal’ – ‘A “representative” – will attend our meetings to ensure the user voice is heard’ Now tends to be – Involved in setting the agenda – Co-applicants – Service User Reference Group – training and supervision – Recruitment – Assessments – Delivery of intervention – Analysis – Interpretation – Writing papers – Dissemination Co-production / co-design User led research- “Patients are doing it for themselves”
Why is involvement important? Answers based on normative values (ideas about the way things should or ought to be) – moral, ethical, or political value systems Empowerment Right to be involved Unethical not to involve people in research about them Gradinger, F., Britten, N., Wyatt, K., Froggatt, K., Gibson, A., Jacoby, A., Lobban, F., Mayes, D., Snape, D., Rawcliffe, T. and Popay, J. (2013), Values associated with public involvement in health and social care research: a narrative review. Health Expectations
BUT Is this enough? OR Do we need to know if it works? Do we need to measure the impact? Do we need to understand how it works?
YES ( or at least – it would help…..) We need to fund it, and currently we live in a “evidence based” funding world – Is it clinically effective? – Is it cost effective? Understanding how it works tells us about mechanisms of action and could lead to improvements in how we involve people more effectively (but I think we still need to do it even if it is not clinically and cost effective- see normative values)
Public Involvement Impact Assessment Framework (www.piiaf.org.uk) MRC funded Collaboration – Popay (Lancaster), Britten (Exeter), Jacoby (Liverpool) Framework to help research teams think about the impact they anticipate their public involvement will have, and how to measure it – Aim was not to tell people how to do it – The process does make you think about different ways to do it
How will this help? We suggest that using this framework will help us to work out how to involve service users more effectively improve the experience of involvement for everyone But we don’t know yet………. - use it - give us your feedback Simon Denegri (Chair of INVOLVE) ‘ There are more tools in public involvement than exist in my local Homebase….the Public Involvement Impact Assessment Framework (PiiAF) is one of the best I’ve seen’
Can a similar framework be used to improve service user involvement in clinical service delivery? Could an adapted version of the Public Involvement Impact Assessment Framework (PiiAF) be developed to provide a mechanism for looking at : – values behind service user involvement in clinical mental health services – approaches and practical issues associated with such involvement – ways to measure and evaluate its impact
Aims of our research To investigate how clinical mental health services currently evaluate service user involvement in design, development and delivery To develop an adapted framework and resources to assist services to measure impact of such involvement, as well as looking at values etc. To pilot the developed framework and resources in a collaborating NHS mental health Trust
Service user involvement in clinical services: Policy background Department of Health policy and guidance/quality standards from NICE and CQC have increasingly acknowledged the value of service user involvement Much rhetoric about importance of involving service users in how services are run and monitored to improve service provision This emphasis about what should be happening at an organisational level sits alongside the personalisation agenda, ‘no decision about me without me’
Recent developments Implementing Recovery through Organisational Change (ImROC) initiative, since 2011; 7 th of 10 organisational challenges in framework: ‘redefining service user involvement’, ongoing work with member NHS mental health Trusts Peter Beresford ‘Beyond the Usual Suspects: Towards Inclusive Involvement’, 2013;report & practical guide National Survivor User Network/Together ‘Service User Involvement in the Delivery of Mental Health Services’, 2014; including service user leadership spectrum for organisations to identify stage at
What is actually happening? Less guidance about how to ‘do’ service user involvement in practice and how to assess how well it works Existing ‘how to’ guidance focuses on principles with some practical tips for involvement Frameworks have been developed to measure participation in individual care and public/service user involvement in research – BUT no universal measure for service user involvement in monitoring/improving services and involvement varies from Trust to Trust throughout the country
How people can get involved Are you a service user would you like to join a service user reference group inputting into the development of this research project? Are you a mental health professional with experience or a keen interest in service user involvement in mental health services who would like to collaborate?
Contact us Fiona Lobban firstname.lastname@example.org 01524 email@example.com Liz Stokes firstname.lastname@example.org 01524 email@example.com Spectrum Centre for Mental Health Research Division of Health Research Lancaster University Lancaster LA1 4YG
Improving health and wellbeing through research – October 2014 Lynne Bax Queens Nurse & Associate Clinical Director “How are you today?” Theme: Capacity Building
B ACKGROUND MSc Hypothesis: Do patients with COPD benefit from self-management strategies which incorporate the use of self initiated rescue medication? Action Plans do increase early symptom recognition, prompt initiation of treatment and a reduction in exacerbation / bed days However...!
W HAT IS THE E VIDENCE For one group of patients regardless of if they have had an intervention Action Plans work! For another group of patients despite receiving an intervention supporting the recognition of symptoms not all the patients responded to their symptoms and / or failed to treat
I NNOVATION Development of a range of literacy sensitive Action Plan tools Increased patient choice Bespoke to enable the patient to have a better understanding of their own condition using a medium that meets their learning needs Provides patients with a single point of contact to access services 24 hours a day, seven days a week, to support self care and reduce inappropriate hospital admissions
‘How are you today ?’ RTM The National Institute of Clinical Excellence (NICE 2004,2010) states: patients at risk of having an exacerbation of their chronic obstructive pulmonary disease (COPD) should be given self-management guidance which encourages them to respond promptly to the symptoms of an exacerbation. Background The study analysed the concept of self management interventions in patients with COPD, addressing the hypothesis; patients with COPD benefit from self-management strategies which incorporate the self initiation of rescue medication. Aim Discussion Results 100% of days symptoms were considered and documented. 100% of patients who document an increase in symptoms communicate the findings using the Single Point of Contact ‘How are you today ?’ RTM Qualitative: Do patients consider ‘How are you today ?’ RTM to be beneficial and appropriate to meet their needs? “easy to use” “made me aware of when I needed to call for help” “pace of the CD just right and simple to use – all very reassuring” Vision ‘How are you today?” RTM ‘How are you today?” RTM is accessible for all patients with a diagnosis of COPD, ‘How are you today?’ RTM ‘How are you today?’ RTM for patients who are independent, this innovation can be instigated from as early as diagnosis, within the GP Practice. ‘How are you today?’ RTM ‘How are you today?’ RTM for patients who are supported in self care by Allied Health Care Professionals ‘How are you today?’ RTM ‘How are you today?’ RTM for patients who are supported with Enhanced Care within the community ‘How are you today?’ RTM ‘How are you today?’ RTM for patients receiving Specialist Care from within the secondary care setting References ‘How are you today ?’ RTM Patients in the intervention group often failed to treat. The CD – Supports the patient in considering symptoms on a daily basis, to recognise the early changes which may require a treatment intervention Contact details :Lynne Bax and Will Sullivan Email:Lynne.firstname.lastname@example.org Mobile:07919530099 Effing T, Kerstjens H, van der Valk P, Zielhuis G, van der Palen J (2009). (Cost)-effectiveness of self-treatment of exacerbations on the severity of exacerbations in patients with COPD: the COPE II study Thorax. 2009 64(11):956-62. Originally published on line 6 Sep2009 Turnock AC, Walters EH, Walters JA, Wood-Baker R (2005). Action plans for chronic obstructive pulmonary disease. Cochrane Database Systematic Review. 19; (4):CD005074. NICE (2004) Chronic obstructive pulmonary disease. CG12. National Institute of Clinical Excellence. London NICE (2010) Chronic obstructive pulmonary disease (updated). CG101. National Institute of Clinical Excellence. London Contains a daily symptom diary which enables the patient to visualise day to day fluctuations in symptoms and identify the early symptoms of an exacerbation as defined by NICE (2004, 2010) Completed plans can be evaluated to identify trends Patients with lower literacy skills have different needs, in terms of education to support self management and self treatment A range of literacy sensitive and Educational tools
C URRENT TARGETED GROUPS Patient who present at Emergency Departments Referral to the community COPD team Over a 12 month period tools will be used with 1000 patients Patients being seen within GP Practice Transform the patient-caregiver relationship into a collaborative partnership
P ROFESSIONAL D OCTORATE H EALTH AND S OCIAL C ARE Does one size fit all? “Does disease severity, in patients with Chronic Obstructive Pulmonary Disease, impact on using the ‘How are you today?’ Action Plans: A phenomenology”
N EXT S TEPS With financial support from Greater Preston and Chorley / South Ribble CCG
V ISION FOR THE FUTURE How are you today? for patients who are independent, from as early as diagnosis How are you today? for patients who are supported in self care by Allied Health Care Professionals How are you today? for patients who are supported by Community Teams How are you today? for patients receiving Specialist Care or on discharge from hospital
Jo Walker Speech & Language Therapist “Making research happen within a small team” Theme: Capacity Building Improving health and wellbeing through research – October 2014
Making Research Happen Within a Small Team Jo Walker, Clinical Specialist Speech & Language Therapist Professional Lead for Adult SLT 17 th October 2014
5.6 WTE Adult community SLT team, Neuro Team & Stroke Team across LCFT footprint (currently 2.0 WTE) Communication and / or eating swallowing disorders for all neuro, ABI and stroke patients, intermediate care, dementia caseloads in community. Brief Overview of SLT resource
Research project looking at recovery of language difficulties after stroke (aphasia) The aim is to give future stroke survivors a prediction about their aphasia recovery. UCL Institute of Neurology in London PLORAS
TIME TIME TIME…….. Clinical caseloads –clinical response time targets Lack the knowledge and expertise to coordinate Don’t know what you don’t know Challenges for a small team
Meeting with LCFT Clinical Research Team Clinical Research Nurse Manager Outlined clear roles and responsibilities with a time line, provided all the coordination, organisation & set up needed. Provided support bespoke to our teams needs……..total hand holding! How we got involved then…..
Lancashire Care Central R&D team sorted out contracts/finance/insurance Karen completed SSI (ethics form) Karen & Jo met to sign & submit the SSI R&D Team granted permission for the study to go ahead 30 calendar days to consent the first patient Who did what, when…….
What I needed to do : Complete GCP training Discuss the study practicalities & expectations with colleagues & them to complete GCP training Create an account on the ethics website (IRAS), ready to sign off the ethics form What Karen did: Completed the ethics form Start a local recruitment plan Sent me a link to create ethics website (IRAS) account Set up Master folder and clinicians folders Who did what when…….
SLTs screen and identify potential candidates - use our resources to support Clinical Research Nurses do the rest: Contact patients & answer ongoing queries Consent meetings with patients Keeps Master file up to date with subject forms Liaise with UCL How it works…
Face to face, phone and email support as we need Keep Master file up to date Monitoring & support Ongoing support From Clinical Research team
Joanne Inman Occupational Therapy Professional Lead, Adult Mental Health “Did curiosity really kill the cat? Or did it take it on the ride of its life?” Theme: Capacity Building Improving health and wellbeing through research – October 2014
Did curiosity really kill the cat? Or did it take it on the ride of it’s life? Joanne Inman, Occupational Therapy Professional Lead, Adult Mental Health & PhD Student, Plymouth University
Did curiosity really kill the cat? Or did it take it on the ride of it’s life?
Today: Curious cats. Curiosity, innovation, research & excellent services. What type of cat are you?
Did curiosity really kill the cat? Or did it take it on the ride of it’s life? Questions Are Fateful “ If I had an hour to solve a problem and my life depended on the solution, I would spend the first 55 minutes determining the proper question to ask, for once I know the proper question, I could solve the problem in less than five minutes.” Albert Einstein
Did curiosity really kill the cat? Or did it take it on the ride of it’s life? Improving occupational therapy services Occupational therapists were like ships in the habour: Ships are safe in the habour, but that’s not what ships are made for (John Shedd). What are the ships achieving when they sail their very best? How do we really know the ships are reaching their destination?
Did curiosity really kill the cat? Or did it take it on the ride of it’s life? Improving occupational therapy services Curious Questions Innovation Curious Questions Research Curious Questions
Did curiosity really kill the cat? Or did it take it on the ride of it’s life? I wonder ….. how could I use what we have learnt to enable more people to recover from mental ill health and live the lives they really want? what would that mean to me and possibly for those people? what and where are the doors I need to open? PhD Studentship. Adult Mental Health Network.
Did curiosity really kill the cat? Or did it take it on the ride of it’s life? Occupational therapy a research-emerging profession I wonder ….. what are the possibilities? how might I take it to the next level? who could best support the research to be the best it can be? I wonder, I wonder, I wonder …..
Did curiosity really kill the cat? Or did it take it on the ride of it’s life? Take a moment to consider your research journey….. What really matters to you and the people you work with? What and where are the doors you would like to open? What might be best placed to help you with this?
I wonder…. what did happen to the cat who did nothing?
Did curiosity really kill the cat? Or did it take it on the ride of it’s life?
Even if you’re on the right track you’ll get run over if you just sit there. Will Rodgers
Did curiosity really kill the cat? Or did it take it on the ride of it’s life?