Medical research charities and the NHS - how can we get the best for patients?

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1 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

2 overview getting the best for patients scene setting common challenges areas for common action?

3 Scene setting AMRC established member charities from large to the small all fund medical research strong drive to benefit people affected by their condition significant funders

4 Who are our members? Big 5 Rare Diseases Neurological Cancer And many more

5 Fund along the translational pathway What do they fund?

6 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

7 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

8 Challenge 1. Providing a Supportive Research Environment

9 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

10 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

11 Challenge 2. Translation of Research and Adoption by NHS

12 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?

13 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?

14 Challenge 3. Working with Industry

15 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

16 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?

17 Challenge 4. Patient Data

18 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

19 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

20 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 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

21 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

22 Next steps Talk to patients about the importance of research.

23 Next steps Use Our vision for research in the NHS to frame your discussion with NHS colleagues and politicians

24 Next steps Visit the AMRC website link to ALL 138 member charities

25 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??

26 Next steps Tell us about how you are influencing adoption & diffusion and how charities (as funders and patient groups) can help

27 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..

28 THANK YOU! Questions? Dr Liz Philpots: +44 (0)

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