Alzheimer s Society 2014

Transcription

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2 Cause (understanding disease process, help in diagnosis, treatment and prevention) Cure (better treatments that could delay, cure or prevent disease) Care (best quality treatment and care to promote quality of life) Alzheimer s Society 2014 It may be original research, repeated/similar research or a review of existing research

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4 Children, young people and families know about living with a chronic disease or condition, and living with complex and multiple conditions about the impact of treatments, such as side-effects, or what makes treatments more or less acceptable about accessing and using services about unmet need and limited choices

5 To reduce mismatches in what gets researched and what is useful to research * Tallon et al, Lancet 2000 * Crowe et al, BMC Research Engagement & Involvement 2015 To avoid waste in research * Chalmers and Glasziou, Lancet 2015

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7 Interventions mentioned in commercial trials, non-commercial trials and research priorities identified by James Lind Alliance Priority Setting Partnerships, % 90% % % 74 Education and training, service 60% 50% 40% delivery, psychological, physical, exercise, complementary, diet, other Radiotherapy, surgery and perioperative, devices, and diagnostic 30% 29 Drugs, vaccines and biologicals 20% % 23 0% JLA patient-clinician Registered non- Registered commercial Priority Setting commercial trials trials Partnerships Patients, clinicians and the research communities priorities for treatment research: there is an important mismatch Crowe S, Fenton M, Hall M, Cowan K, Chalmers I Research Involvement and Engagement 2015, 1:2 doi: /s x

8 Founded in UK in 2004 First partnership completed in 2006 Since then 41 more completed and 35 ongoing Participating public? 300 3,000 A small number have worked directly with children, young people and families 18 would qualify as childhood chronic conditions e.g. asthma, eczema, autism, mental health, childhood disability, eating disorders, childhood onset vision disorders

9 Top Ten Research questions

10 People affected by chronic conditions are able to participate in research priority setting by; Suggesting topics that they think are unanswered, and/or relevant to their day to day lives for further investigation Selecting research priorities of importance to them Helping to reach consensus with other groups of people for a research Top Ten

11 People affected by chronic conditions sometimes suggest research questions new to the research community - we call these unknown unknowns People affected by chronic conditions sometimes have different priorities to health professionals and researchers we think that this is OK! People affected by chronic conditions have the ability to act as champions for research priorities, and effect culture change

12 There appear to be common priorities identified by people living with different chronic conditions, that have emerged from the James Lind Alliance approach Is this chance? Needs more research. May be relevant for the Kaleidoscope project

13 Cause and cure of chronic conditions Effective diagnosis and timing Side effects, long term effects and safety of drugs Interaction of drugs with life ; e.g. Breastfeeding, sex, and puberty Most effective treatment strategies and personalised plans The role of diet, exercise and lifestyle The role of talking therapies (e.g. Counselling, peer support)

14 What does good and effective self management look like? Managing relapses, flares and acute episodes Environmental issues (e.g. school and bullying, reducing stigma) Role and timing of therapists input (e.g. Language, physiotherapy) Healthcare workers awareness of chronic illness, and use of effective communication skills Effect of and (family) impact of wait times for services and treatments What next when treatments don t work?

15 Remember the problems of mismatches and waste? You are here to help us fix this By telling us about your research ideas and priorities for childhood chronic conditions, from an organisation view this morning and a personal view this afternoon

16 For contributing to this important meeting