1. Choosing outcomes and measures - for doing and using research James Lind Alliance Outcomes in clinical research – whose responsibility? 20 November.

Slides:



Advertisements
Similar presentations
EU Presidency Conference Effective policies for the development of competencies of youth in Europe Warsaw, November 2011 Improving basic skills in.
Advertisements

1 Entering through the same door - Universal design put simple Soren Ginnerup Danish Building Research Institute Consultant to the COE group on Universal.
Professor Andrew Long School of Healthcare University of Leeds June 19 th 2006 Health Systems Research: What is it? And, does it matter?
Evidence-based Dental Practice Developing guidelines or clinical recommendations Slide #1 This lecture follows the previous online lecture on evidence.
Edition Vitale and Giglierano Chapter 6 Assessing and Forecasting Markets Prepared by John T. Drea, Western Illinois University.
Integrating the NASP Practice Model Into Presentations: Resource Slides Referencing the NASP Practice Model in professional development presentations helps.
Labeling claims for patient- reported outcomes (A regulatory perspective) FDA/Industry Workshop Washington, DC September 16, 2005 Lisa A. Kammerman, Ph.D.
Communications Strategy Day 2
HELPING THE NATION SPEND WISELY Performance audit and evaluation: common ground with Internal Audit ? The UK National Audit Office experience Jeremy Lonsdale.
Jeopardy Q 1 Q 6 Q 11 Q 16 Q 21 Q 2 Q 7 Q 12 Q 17 Q 22 Q 3 Q 8 Q 13
Jeopardy Q 1 Q 6 Q 11 Q 16 Q 21 Q 2 Q 7 Q 12 Q 17 Q 22 Q 3 Q 8 Q 13
0 - 0.
National Academy of Engineering of the National Academies 1 Phase II: Educating the 2020 Engineer Phase II: Adapting Engineering Education to the New Century...
DIVIDING INTEGERS 1. IF THE SIGNS ARE THE SAME THE ANSWER IS POSITIVE 2. IF THE SIGNS ARE DIFFERENT THE ANSWER IS NEGATIVE.
MULT. INTEGERS 1. IF THE SIGNS ARE THE SAME THE ANSWER IS POSITIVE 2. IF THE SIGNS ARE DIFFERENT THE ANSWER IS NEGATIVE.
Teacher Name Class / Subject Date A:B: Write an answer here #1 Write your question Here C:D: Write an answer here.
Addition Facts
What, when and how?: The context for User-Led Organisations Rich Watts Department of Health January 2010.
Faculty of Health & Social Care Improving Safeguarding Practice: Study of Serious Case Reviews Wendy Rose and Julie Barnes.
Chapter 3 Critically reviewing the literature
Implementing NICE guidance
PP Step in to Learning Improving the skills of parents and carers. Improving the skills of health professionals. A training and development programme for.
Understanding Customer Behaviour C H A P T E R 8.
© Maybo Ltd Violence Risk Reduction IOSH 2013 Bill Fox, Maybo.
The Roles of a Sports Coach
Bridging the gap between good practice principles and research study realities. Using case studies to build descriptors of the public involvement role.
1 Quality Indicators for Device Demonstrations April 21, 2009 Lisa Kosh Diana Carl.
2008 Johns Hopkins Bloomberg School of Public Health Setting Up a Smoking Cessation Clinic Sophia Chan PhD, MPH, RN, RSCN Department of Nursing Studies.
1 Highlights of a Systematic Review of Research on Peer-Delivered Services Boston University Center for Psychiatric Rehabilitation March 2010.
Writing up improvement work for impact and implementation Helen Crisp Assistant Director Research and Evaluation.
Twenty Questions Subject: Twenty Questions
Promoting Regulatory Excellence Self Assessment & Physiotherapy: the Ontario Model Jan Robinson, Registrar & CEO, College of Physiotherapists of Ontario.
How to commence the IT Modernization Process?
1Where are we with health intelligence? Dr Julian Flowers Director of Knowledge and Intelligence (KIT East), Public Health England.
Research Design Service West Midlands RfPB Research Funding Application Workshop 28 th February 2014.
Young Peoples' Leadership 1 Young People’s Fellowship Fellowship conference July 2006.
Senior Manager – Research Finance & Programmes
Knowledge for Knowledge Translation Jeremy Grimshaw MD, PhD Clinical Epidemiology Program, OHRI Department of Medicine, University of Ottawa Canada Research.
1 CHOBIC Project and Reports February, Outline C-HOBIC project Reports Utilization of Reports.
Alcohol and Other Drug Treatment Court (AODTC) Pilot.
The users’ perspective: what integrated care should look like Robert Johnstone.
Minority Clinical Trial Participant Webinar: Difficult Conversations Daniel E. Epner, M.D. General Oncology Department Medical Director, International.
Addition 1’s to 20.
25 seconds left…...
The Finnish perspective on behaviour management and MAPA Aulikki Yliniva Sirpa Tölli
Week 1.
1 © 2006 Curriculum K-12 Directorate, NSW Department of Education and Training English K-6 Syllabus Using the syllabus for consistency of assessment.
Comparisons of patients’, clinicians’ and researchers’ agendas Sandy Oliver, Reader in Public Policy Sub-brand to go here.
CDC’s Clear Communication Index John Parmer, Ph.D. June 2014 Office of the Director Office of the Associate Director for Communication.
Dr M Clare Taylor Coventry University, UK. Takk for at jeg ble invitert til å snakke på denne konferansen exploring EBOT2.
Informed Consent For Chemotherapy
Experiences of Patient and Public involvement in the Research Process Roma Maguire Senior Research Fellow Cancer Care Research Team School of Nursing and.
NSW Supported decision making pilot Supported Decision Making Conference Melbourne 18 October 2013.
It Starts with a Conversation Maryland MOLST Train the Trainer Program June 2012 (presented at the University of Maryland School of Law on April 2, 2013)
September 23, 2014 ACCESS-Mental Health CT: Meet the Hub Teams.
Copyright © 2004 Pearson Education Canada Inc Personal Selling Today Introduction and Overview CHAPTER.
Ask Me Anything American Nurses Training Association.
A Research Active Hospice
BALANCING EFFICIENCY AND EQUITY A NEW INTERNATIONAL RESEARCH PROGRAMME ADDRESSING THE ROLE OF VALUES IN HEALTH CARE Department of Primary Care and Public.
A summary of feedback from service users and carers: Adult Social Care – what does good look like?
Local Involvement Network (LINK) Mubarak Ismail Sheffield Hallam University.
Workshop The science and methodologies behind HTA, diversity and commonality across the EU Achieving more patient centred HTA in different countries.
Patient And Public Involvement (PPI) in Research Dr. Steven Blackburn NIHR Research Design Service West Midlands (Keele University Hub)
Valley View Secondary School The content of the Research Project comprises the:  Capabilities  Research framework.  In the Research Project students.
NIHR Themed Call Prevention and treatment of obesity Writing a good application and the role of the RDS 19 th January 2016.
Methodological Issues in Implantable Medical Device(IMDs) Studies Abdallah ABOUIHIA Senior Statistician, Medtronic.
Reclaiming generalism An international perspective.
Peer Element of ODDESSI
Arthritis and Musculoskeletal Alliance
Levels of involvement Consultation Collaboration User control
Presentation transcript:

1

Choosing outcomes and measures - for doing and using research James Lind Alliance Outcomes in clinical research – whose responsibility? 20 November 2008 Sandy Oliver Professor of Public Policy Sub-brand to go here

3 Outline Using outcomes in decisions Choosing outcomes for decision What are the challenges? Who to involve, and why? What expertise is required? What roles may we adopt? What are our responsibilities?

Using outcomes in decisions? Personal decisions About own care, or patient’s care About participating in research (providing data, recruiting participants) Collective decisions Developing policy Planning services Doing research 4

5 Choosing outcomes for decisions IF USING RESEARCH… Choosing from a set of outcomes available from completed research for personal decisions for collective decisions IF DOING RESEACH… Thinking of plausible outcomes of treatment, good and bad Choosing those which are important and measurable

6 Plausible, important and measurable PLAUSIBLE AND IMPORTANT To whom? –Patients, carers, clinicians, researchers? For what? –Choosing personal care, Planning services, Developing interventions? MEASURABLE Technically? Within staffing resources? Without exhausting participants good will? For how long?

7 Challenges when choosing outcomes Thinking about… Complex issues Complex health conditions Undesired effects as well as desired effects Deciding priorities Choosing between all possible outcomes Limited personal perspective Sharing ideas and coming to agreement

Thinking about outcomes It’s difficult thinking about personal recovery goals… for coping strategies. (CEO charity) undesired effects… But they are just as important [as desired effects]. (Health services Researcher) a complex outcome study. Useful though. (Health services researcher) In contrast Quite easy as there are research questions I am exploring currently in a multi-centre trial. (Health service researcher) 8

Deciding priorities Hard to disentangle the effects and therefore hard to prioritise (anon.) Quite easy to list the symptoms and the desired effects, it was harder to decide which was the most important and why. (Research funder) I’m afraid that it is not possible to rank the desired effects in this way. [This condition] is multi-faceted; the facets vary in intensity in any one individual, over time and between individuals. What matters is to ensure that all the effects of the disease are included in the outcome measures. (Service user/ Support group representative) 9

Limited personal perspective I found it hard to move between my personal experience and objective notions of measurement and ranking…In thinking about a condition which I don’t have myself but have professional responsibility for, I found it easier to answer the questions. But I’m not convinced that my answers are generally accurate. (Service user/ Support group representative) [What was hard?] Not knowing how physiological benefits are measured (Patient involvement lead) I am not a sufferer myself. I don’t represent patients for any single disease area, and so am not knowledgeable about any one disease to give a sensible set of examples. (Patient Involvement specialist) 10

Sharing ideas I found it difficult to summarise in a few words the major issues (Health services user-researcher) 11

Who to involve, and why? Ethical, rights, citizenship arguments justify involvement in choosing areas of life deserving research prioritising problems ensuring accountability of researchers Pragmatic arguments for better research, use of research findings and, ultimately, health justify involvement in: deciding how the research should be done finding solutions 12

What expertise do we need? To prioritise problems deserving research… Understanding about living with the condition Understanding about treating people with the condition Understanding the purpose of research Skills for communicating with and for the different groups 13

What expertise do we need? To improve research and research use… Understanding about living with the condition Understanding about treating people with the condition Understanding the nature, potential, limitations and options for research Skills for communicating with and for the different groups 14

What roles? As individual patients or clinicians – to make individual decisions about particular treatments or research projects As a voice for patients or clinicians – to be well informed and able to speak about a range of views As a researcher – to take into account the views of patients and clinicians when planning, conducting and reporting research As a ‘link’ person – to help different people understand each others’ issues and work together 15

Spokespeople for collective decisions Networked/ well informed patients and carers Networked/ well informed health professionals Who… Understand the purpose of research Understand the nature, potential and limitations of research Are up-to-date with their peers Listen, share ideas, learn 16

Spokespersons: the current cast Networked/ well informed patients and carers Networked/ well informed health professionals Individual patients and carers Individual health professionals Patient and Public Involvement (PPI) leads 17

The current cast: roles for choosing outcomes and measures Researchers Networked patients, carers & health professionals Individual patients Individual health professionals PPI leads Designing measures Spokespersons Piloting measures Link persons 18

Our responsibilities Be clear about the types of decisions (personal/collective) Learn about the topic Be clear about own expertise and roles (as an individual, spokesperson, link person) Be clear about other people’s expertise and roles Listen to other people Share our own ideas Keep our expertise up-to-date Learn from our experiences of sharing decisions 19

Ideas about roles and responsibilities… World Health Organisation International Conference on Primary Health Care, Alma-Ata, USSR, Philosophy of communication Habermas’ ideology about fair play in speech and mutual understanding History of public involvement in science Collins and Evans (2002) The Third Wave of Science Studies: Studies of Expertise and Experience. Social Studies of Science, Vol. 32, No. 2, Study of expertise Stewart (2007) The communication of expertise in the context of multi-disciplined, participatory, problem-based training in evidence-based decision-making. PhD thesis. Studies of getting research findings into decisions Greenhalgh et al (2004) Diffusion of innovations in service organizations: systematic review and recommendations. The Milbank Quarterly 82 (4): 581 – 629. Your pre-seminar contributions to today’s discussion 20

21 Thank you