EUPATI- UK Leeds March 2014
Dr. J. Paul Schofield
1
Patient involvement in clinical research
and long term conditions -wha...
ABPI Patient Organisation Forum
Brings together representatives of the pharmaceutical industry and
patient and charity gro...
Meetings 2013-14
February 2013 Value based pricing
May 2013 Understanding the new NHS
September 2013 ABPI Code of Practice...
Myeloma
UK
Asthma
UK
Hepatitis
C Trust
British Heart
Foundation
National
Rheumatoid
Arthritis
Society
RNIB
Arthritis
Care
...
On-going industry initiatives
(examples from survey)
•UK-specific activities
– Developing patient materials
– Input into p...
Patient Reported Outcome
Measures (PROMs) for asthma and allergy: systematic review and evaluation of clinical
utility
Fun...
•One of our key quality appraisal criteria is the
degree to which people with asthma were involved
in the development of t...
TheSeeChange:ThinkPaincampaign
Campaign objective: toraise
awarenessaboutthesigns and
symptomsofunidentified painin people...
CareHome Audit:
Nappconductedastudyintothe
recognitionandtreatmentof pain
in peoplewithdementia living in
carehomes,entitl...
www.paincentrenapp.co.uk
www.youtube.com
Mediacoverageandresponse
Coverage: Exclusive article in the Daily
Mail,andfurther articles in publications
such as Nursing...
Potential opportunities for further industry
engagement with patients
(examples from survey)
•Suggestions from patients
–L...
THANK YOU
Dr. J. Paul Schofield paul.schofield@napp.co.uk
15
Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership (Paul Sc...
Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership (Paul Sc...
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Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership (Paul Schofield, ABPI)

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"Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership", presented by Dr. J. Paul Schofield, ABPI, at EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK

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Transcript of "Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership (Paul Schofield, ABPI)"

  1. 1. EUPATI- UK Leeds March 2014 Dr. J. Paul Schofield 1 Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership
  2. 2. ABPI Patient Organisation Forum Brings together representatives of the pharmaceutical industry and patient and charity groups in an open forum Aims to: • identify areas of mutual interest • promote understanding • develop joint working on policy and practice, where appropriate By facilitating ongoing dialogue, open discussions and information sharing on issues of common interest, including healthcare policy • Forum meetings take place at least four times a year
  3. 3. Meetings 2013-14 February 2013 Value based pricing May 2013 Understanding the new NHS September 2013 ABPI Code of Practice November 2013 New pricing agreement (ABPI briefing for patient groups) February 2014 Value based assessment Industry & patient groups working together ABPI Patient Organisation Forum Equal representation of industry and patient organisations Supported by a steering group of patient groups and company representatives - to agree meetings, agendas, speakers, etc. •ABPI acts as Secretariat and contact point for enquiries Andrew Hollingsworth, ABPI: ahollingsworth@abpi.org.uk •Transparency: Summaries of meetings and attendance is published on the ABPI website: www.abpi.org.uk/our-work/patient-organisation-forum
  4. 4. Myeloma UK Asthma UK Hepatitis C Trust British Heart Foundation National Rheumatoid Arthritis Society RNIB Arthritis Care INVOLVE James Whale Fund for Kidney Cancer Epilepsy Society Participating groups CML Support Group MS Society Genetic Alliance UK Breakthrough Breast Cancer AMRC Cancer Research UK Prostate Cancer UK Cancer 52 British Liver Trust Diabetes UK Independent Cancer Patient’s Voice Rarer Cancers Foundation International Alliance of Patients Organisation s Kidney Research UK Artial Fibriliation Association Haemophilia Society Pain UK Breast Cancer Campaign Child Growth Foundation Cystitis & Overactive Bladder Foundation AntiCoagulati on Europe Roy Castle Lung Foundation NCRICF Trust Arthritis & Musculoskel etal Alliance
  5. 5. On-going industry initiatives (examples from survey) •UK-specific activities – Developing patient materials – Input into patient reported outcome measures (PROMs) – Assisting with patient recruitment into clinical trials – Patients on Scientific Advisory Boards to ensure patients perspective captured – Partnering on disease awareness programmes – Participating in company activities explaining patient/disease advocacy – School outreach programmes on R&D process, STEM •Global research activities – Ensuring patients aware of research opportunities – Increasingly involving patients in study design – Patients invited to discuss development programs •Interactions with patient groups – Involvement with patient organisations on policy activities – Patient organisations present at disease-focused conferences – Reviewing patient information sheets 5
  6. 6. Patient Reported Outcome Measures (PROMs) for asthma and allergy: systematic review and evaluation of clinical utility Funded by NAPP Aziz Sheikh Professor of Primary Care R&D Director, Centre for Population Health Sciences Allergy and Respiratory Research Group, The University of Edinburgh An example
  7. 7. •One of our key quality appraisal criteria is the degree to which people with asthma were involved in the development of the PROMs •Most do this well, but some are mostly based on expert views (e.g. Marks AQLQ, RCP 3Q) •But how patient-friendly is a 68-item questionnaire (LWAQ) and is this likely to be useful in clinical contexts? •Conversely, does a 3-item tool (RCP 3Q) tell a clinician anything meaningful? Patient perceptions of PROMs in clinical settings need to be studied Allergy and Respiratory Research Group, The University of Edinburgh Patient-centredness
  8. 8. TheSeeChange:ThinkPaincampaign Campaign objective: toraise awarenessaboutthesigns and symptomsofunidentified painin people withdementia, andto highlight areasof need andbestpracticein the managementofpainin carehomes. Targetaudience: professionalandfamilycarerslookingaftersomeone withdementia.
  9. 9. CareHome Audit: Nappconductedastudyintothe recognitionandtreatmentof pain in peoplewithdementia living in carehomes,entitled “Painin PeoplewithDementia:A Silent Tragedy.” ThePAINacronym: booklets,postersand videos promotingSee Change:ThinkPain
  10. 10. www.paincentrenapp.co.uk www.youtube.com
  11. 11. Mediacoverageandresponse Coverage: Exclusive article in the Daily Mail,andfurther articles in publications such as Nursing Times, as well as radio coverage reaching almost3 million listeners, andbroad coverage on twitter and facebook, initiated by patient groups such as the Alzheimer’s Society, the NCPC andPain UK. Engagement: Positive responses from the CQC,Public Health England, NICE, Department ofHealth.
  12. 12. Potential opportunities for further industry engagement with patients (examples from survey) •Suggestions from patients –Letter of acknowledgement/thanks –Trial progress reports/updates when medicine marketed –One charity amended ABPI’s ‘Time to Flourish’ Infographic •Suggestions from companies –Involve patients in creation of Informed Consent Forms –Partnering with patients and their representatives to learn from their experiences –ABPI Code of Practice review in the new NHS – to see how reforms will affect interaction •Better education of patients/the public –Medicines R&D / clinical trials –Regulation / safety monitoring / promotion –Pricing/value assessment 14
  13. 13. THANK YOU Dr. J. Paul Schofield paul.schofield@napp.co.uk 15

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