1 / 12

REG set up: first steps…

REG set up: first steps…. Alison Chisholm 7.40 am – 7:45 am. Initial wish.

kelda
Download Presentation

REG set up: first steps…

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. REG set up: first steps… Alison Chisholm7.40 am – 7:45 am

  2. Initial wish “Set up an independent collaboration platform that will raise the quality and profile of real-life (respiratory) researchand achieve better integration of high-quality real-life data into clinical practice guidelines for the benefit of patients and practitioners”

  3. Set up an independent organization • Registered as a not-for-profit social enterprise in early 2013: • Social enterprise: an organization with a “social mission” that uses its means to achieve its goal rather than to maximize profits. • Work began in October 2012. • 6-month “set-up phase” • Expect it to run for 4 years (1 April 2013– 31 April 2017)

  4. Structure Multiple sponsors ensure the group’s independence Director: Alison Chisholm REG Founding Member: David Price Internal Research & Implementation Collaborators Management Steering Group External Collaborators / PartnersSocieties, guideline bodies, etc IDENTIFY RESEARCH NEEDS & CONDUCT HIGH-QUALITY RESEARCH COMMUNICATE, DISSEMINATE & EDUCATE:RAISE AWARENESS, SHARE EXPERTISE WORK WITH GUIDELINE GROUPS & AUTHORITIES TO BETTER INTEGRATE REAL-LIFE RESEARCH SET, PROMOTE & RAISE STANDARDS

  5. Sponsorship: who & what does it mean? • Sponsors OF REG: • Multiple sponsors – key to demonstrating independence • Current sponsors have a combination of: unrestricted grants, reduced-cost data analysis & statistical support and free data access • Contact Alison for more information about sponsorship. • REG funding: • From pooled sponsor monies, REG will fund activities aligned with REG’s driving principle, e.g.: • Studies: data procurement, protocol development, ≥1 month of data analyst & statistical time, abstract development, ≥1 publication • Publications: coordination, editorial and writing support, submission fees • Meetings: at key respiratory congresses and events • Lobbying, advocacy: collaborative projects

  6. International network of collaborators Denmark: 1 Germany: 3 Greece: 1 Bulgaria: 1 Italy: 2 Belgium: 1 France: 2 Netherlands: 6 Spain: 4 Sweden: 3 UK: 19 Ireland: 1 Canada: 3 75 independent respiratory experts united across 20 different countries USA: 20 China: 2 Hong Kong: 1 Singapore: 1 Brazil: 1 Australia: 2 South Africa: 1 Management Committee: sets the strategy and provides rapid decision-making. Members include: a pediatrician, an allergist, a health economist, primary & secondary care representatives, methodologists…

  7. External collaborators: partners • International Primary Care’s Respiratory Group (IPCRG) UNLOCK Group: • UNLOCK has been working to set minimum quality standards for observational study datasets • Primary care was the original champion of real-life research • Joint ERS session proposal for the 2014 European Respiratory Society (ERS) Congress • Applying to set up networks through the: • ERS Clinical Research Collaborations • European Medical Authority Network of Centres for Pharmacoepidemiology and Pharmacovigilance (ENCePP)

  8. Raise awareness of REG, starting the dialogue... • Communication platforms developed: • Website: www.effectivenessevaluation.org • Central repository for those working in real-life respiratory research • Twitter, LinkedIn • Discussions stimulated by: • Spring newsletters • Year 1 activity plan, based on: • Management Steering Committee Meeting discussions (London February 2013) • REG collaborator suggestions

  9. Sponsorship • Current sponsors offer a combination of: • Teva & BoehringerIngelheim: unrestricted grants • Research in Real Life: access to reduced-cost data analysis & statistical support • Optimum Patient Care: access to the Optimum Patient Care Research Database (OPCRD) – a UK respiratory database containing EMRs and PROs for ~400,000 respiratory patients • Grow the pool of sponsors: • Demonstrate independence • Fund more activities to make the initiative more successful

  10. Next steps… Hand over to the REG collaborators to say a few words about some of the activities REG is sponsoring in year 1 • Set the group up as an independent organisation • Develop a network of collaborators & devise a structure • Open channels of communication: • Internally: REG collaborators to identify the challenges to be addressed • Externally: potential partner organisations & sponsors • Devise and implement an action plan: • More than a discussion forum • Establish a position of authority: • Conduct high-quality research • Tackle the challenges facing the field: • Define, promote, communicate standards • Raise awareness of the field and promote best practice. • Collaboration with guideline bodies and licensing authorities to better integrate real-life research

  11. YEAR 1 ACTIVITIES

  12. Research studies

More Related