medical research charities and the nhs - how can we get ... · scene setting amrc established 1987...
TRANSCRIPT
Medical research charities and the NHS - how can we get the best for patients?
Dr Liz Philpots, head of research 2015 Annual NHS R&D forum – 5-6 May 2015
overview
‘getting the best for patients’
• scene setting • common challenges • areas for common action?
Scene setting
AMRC established 1987
• 138 member charities…from large to the small
• all fund medical research
• strong drive to benefit people affected by their condition
• significant funders
Who are our members?
Big 5
Rare Diseases
Neurological
Cancer And many more
What do they fund?
Fund along the ‘translational pathway’
What do they fund ?
fund across all disease areas
many speak for patients
hold information about patients: • contacts with people affected • needs surveys • registries showing natural history of disease
provide information to patients
Major Challenges for AMRC Members
Challenge 1: Providing a supportive UK research environment
Challenge 2: Translation of research and adoption by the NHS
Challenge 3: Working with Industry
Challenge 4: Patient Data
Challenge 1. Providing a Supportive Research Environment
Strengths: • NIHR infrastructure – network / portfolio management • HRA – reducing bureaucracy & increasing collaborative working • Patients want to be involved in research
Weaknesses: • Structure still confusing – CLAHRC/AHSN/ AHSC/ EMC/ BRU - • Excess treatment costs • NHS staff/ leaders – not seeing the importance of research • ‘Wider’ NHS even less sure that research is valuable
Challenge 1. Providing a Supportive Research Environment
Opportunities • Accord - getting the costs right • HRA approval • Revised Research Governance Framework
Threats • More reorganisation or change to infrastructure • Research ‘squeezed out’ by increasing costs of service/care
Challenge 1. Providing a Supportive Research Environment
Challenge 2. Translation of Research and Adoption by NHS
Challenge 2. Translation of Research and Adoption by NHS
Strengths: • Funding for translation • Clarity on some of the steps • Some patient involvement in defining the need
Weaknesses: • Language – do we all understand each other? • Not clear how to get great adoption/diffusion – not just evidence – culture • Is there enough service involvement in assessing practicality? • Where is the service ‘pull’ to match research ‘push’?
Challenge 2. Translation of Research and Adoption by NHS
Opportunities • ‘implementation science’ – looking at the final barriers to adoption &
diffusion
Threats • Do ultimate adopters (CCG’s, specialist commissioners) want the
innovation? • Do we understand what innovation THEY want (and are willing to pay for/
use) • Are we keeping ahead of technology?
Challenge 3. Working with Industry
Challenge 3. Working with Industry
Strengths: • Charities want to work with Industry • ‘Essential Partnership’ – principles & guidance on how to do it • Many examples of industry interaction becoming collaborative:
• co-funding pre-competitive research with each other & with charities
• Pharma/biotech asking for patient voice
Weaknesses: • Patient voice not often heard early enough • Are companies/regulators looking at end points that matter to
patients? • Hard to make connections with companies – esp with devices/
diagnostics
Challenge 3. Working with Industry
Opportunities: • New regulatory routes: Early Access to Medicines; Adaptive pathways • Stratification – more targeted treatment • Repurposing • Freeman ‘Innovative Medicines and Medical Technology Review’ –
treatments getting to patients more quickly
Threats: • Reputational - collaborating with industry & resultant treatment not
available in UK…. • UK voice/market vs global pharma?
Challenge 4. Patient Data
Challenge 4. Patient Data
Strengths: • Patients want to share their info
• Registries with natural history info • Tissue banks and linked clinical data • ‘consent to consent’ – join dementia research
• NHS – massive opportunity from linked clinical data
• Growing data infrastructure • CPRD • Farr Institute • NHS hospitals – linked data • Biobank/100,000 Genomes
Challenge 4. Patient Data
Weaknesses: • Public confidence
• ‘who will see my data’ • ‘can I change my mind?’ • ‘how will my data be used in future?’
• ‘Patients’ are seen as homogeneous group…. but we ALL view risk differently – so solutions need to be sophisticated
• Technically challenging – and needs organisations to work together • Technically complex – hard to explain clearly without over-simplifying
Challenge 4. Patient Data
Opportunities: • Patient data/real world data – use in early access/adaptive pathway
approaches • Data could make research more cost-effective • Personalised Health and Care 2020 -allows funders/patient groups to
shape & link their own activities • Patients WANT to share their data – we need to help them do it ‘safely’
Threats: • EU data protection regulations – • Loss of trust - need:
• Care – protect anonymity & dignity • Competence – confidence in the way the data is stored, handled
and disseminated • Choice – people can choose to be involved or not, and know that
that choice entails – continuing /dynamic
Areas for common action
Consistent messages: • to patients • to NHS staff at ALL levels
– research is vital
Shared messages to politicians
Closer working – leverage of infrastructure
Understanding adoption – from the bottom up
Next steps
Talk to patients about the importance of research….
Next steps
Use ‘Our vision for research in the NHS’ – to frame your discussion with NHS colleagues and politicians
Next steps
Visit the AMRC website – link to ALL 138 member charities
Next steps
Talk to us about how you would like to work with charities…
Recent events included presentations from: - a NHS Trust - NETSCC - a CLAHRC - an AHSN - …………. could you be next??
Next steps
Tell us about how you are influencing adoption & diffusion – and how charities (as funders and patient groups) can help
Conclusions
• The charity sector plays a vital role in supporting the UK medical research environment
• We share common challenges with the NHS, and we have a common goal
• Closer working can only help us all …..
