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The value of EARIP (1/2): Kjeld Hansen

EARIP offers a new practice in asthma research and innovation by involving patients from the early stages. Patients contribute through surveys, patient advisory groups, and workshops, ensuring their priorities are addressed. The value of EARIP lies in better reflecting patients' realities and increasing the relevance and impact of research.

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The value of EARIP (1/2): Kjeld Hansen

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  1. The value of EARIP (1/2):Kjeld Hansen Motivation: • Offers a new practice in asthma research and innovation projects • Patients are involved from a very early stage through surveys and patient advisors • Patients are involved on multiple levels and with multiple stakeholders • Patients are involved throughout the entire project

  2. Patient inclusion in EARIP • Three-step patient inclusion: • Survey 1 • Patient Advisory Group • Work-packages and workshops • Research output in the form of research questions, editorial, a.o.

  3. Survey 1: Participation The research priorities of people with asthma, their families and primary care doctors/nurses can result in different priorities than those of researchers and the industry. • Respondents: 1,904 • Distribution: 22 countries • Outcome: 15 priorities were identified as important or very important by ≥95% of respondents

  4. Survey 1: Priorities • Being able to identify people at increased risk of needing urgent or emergency care for their asthma • Infections (e.g. how an upper respiratory tract infection can trigger asthma and asthma exacerbations (asthma attacks)) • Looking at how severe asthma can be managed where it is not possible to access emergency services and hospital • Understanding the different ‘types’ of asthma to personalise treatment • Finding ways to diagnose asthma earlier in primary care, including tests and equipment to look at symptoms

  5. Survey 1: Open responses Themes: • Comorbidities • Educating society (such as employers) • Educating healthcare professionals • Late and early diagnosis (such as triggers) • Self-management (such as patient information, everyday coping strategies) • Environmental factors (such as weather and temperature) • Lifestyle factors (such as nutrition, weight, exercise, stress) • Hormones

  6. Patient Advisory Group (PAG) • Call for patient application • Regular teleconferences • Peer-support and –involvement • Allocation to WPs

  7. Influence • How these findings have influenced EARIP and the roadmap: • All WP reports addressed relevant patient priorities • Patient advisors assigned to each WP • Patient priorities included in survey 2 • Patient advisors included in the consensus workshop

  8. Impact • Consensus workshop on asthma self-management • Workshop with Members of European Parliament (MEPs) • Consensus workshop on asthma diagnosis and monitoring • Consensus workshop on top 15 priorities • Developing research questions for future research funding calls

  9. Consequences • Evolvement of patient involvement • Reality check • Recognition of other dimensions • Patients, practitioners and other stakeholders are redefining their relationship

  10. The value of EARIP (2/2) • Better reflection of patients’ realities • Increased relevance of research might lead to more impact • Reflects a more sustianable distribution of responsibilities and duties bt. stakeholders • The challenges in the intensification of collaboration bt. stakeholders might lead to more innovative ideas

  11. Outcome • Reinforces patients’ conviction of the value of their expertice in own condition • Increased momentum to drive and support this development • Produce a mandate for the research community and stakeholders • Enforces commitment to the responsibility of patients as stakeholders

  12. The asthma roadmap:Pippa Powell Aim: To produce a roadmap of what research is needed and should be prioritised to reduce asthma deaths and hospitalisations across Europe, and improve asthma control and quality of life for people of all ages with asthma

  13. Stakeholders

  14. Work Package 6

  15. Roadmap process

  16. Survey 2 results • 374 respondents from 35 countries

  17. Priority-setting workshop

  18. Participants • Dominique Hammerlink • Phil Taverner • Kjeld Hansen • Giorgio Salerni • Otto Spranger • Breda Flood • LiliyaGentet • Karin Lisspers • Hilary Pinnock • Liliana Silva • Antonius Schneider • Jacky Smith • Peter Barnes • Mina Gaga • Patients and patient orgs • Primary and secondary care • Industry and • policy influencers • Research • John Matthews • David Myles • Marc van der Schee • Piotr Kuna • Maciej Kupczyk • Christina Gratziou • Guy Joos • Peter Sterk • Ian Adcock • Elisabeth Bel • Sven-Erik Dahlen • Ian Hall • Stephen Holgate • Rob Horne

  19. Workshop process Facilitated by K. Cowan, James Lind Alliance

  20. Priority themes

  21. Feedback • ‘No definitive way of diagnosing and monitoring asthma, which is a hurdle that must be overcome in order to address self-management and adherence issues’ • ‘Global public health is as important as basic science’ • ‘What is important in diagnosis is that this can be conducted in a primary care setting, quickly and accurately’ • ‘Patients need a holistic approach which encompasses co-morbidities’

  22. Research questions • 80 research questions developed • To ensure the translation and implementation of the priorities • 3-7 per priority • Using PICO format • Collaboration between experts in each topic (professionals, patients and patient orgs) • Available at www.EARIP.eu/roadmap

  23. Example – priority 1 • Identify, understand and better classify the different forms of asthma, their progression, and effect on airway inflammation and the immune system • Developed by: Dr Sven Erik Dahlen and Prof Ian Adcock • Research questions (PICO format): • In adults and children with severe asthma on high dose optimal therapy, can multi-omic analysis in sputum improve classification and indication of possible responders to Ab therapy compared with clinical symptoms, FeNO and eosinophil counts?   • In adults and children with severe asthma, can non-invasive biomarkers of breath and urine predict responders/non-responders to omalizumab, compared with blood eosinophilia and IgE levels?  • In adults and children with severe asthma, can urinary doping lab assessment provide signatures of compliance and drug (in)action of triamcinolone or OCS better than FeNO and eosinophil counts?

  24. Example - priorities 2 • Assess the effectiveness of patient-professional communication to develop patient-professional partnerships, for example to optimise self-management and adherence • Developed by: Rob Horne / Patient Advisory Group • Research questions (PICO format): • How can patients/carers and HCPs be supported to develop effective partnerships to meet the patient’s changing requirements over time and across conditions? • In adults, can supporting HCPs to better communicate with patients achieve better asthma control through effective partnerships that facilitate optimal adherence and self-management? • In adults, does using a patient-centred approach (i.e. written personalised asthma action plans) result in cost savings, as compared to usual care? • In adults, can developing a better understanding of the psychosocial factors determining outcomes (e.g. depression, emotional stress) improve asthma outcomes compared with usual care?

  25. For more information • Flyer on seats and at EARIP hotdesk • EARIP website: www.EARIP.eu • Abstracts: • Masefield S, Metcalf L, Powell P et al. What is important to people with asthma: Maximising research impact? Eur RespirJ, Sep 2015, 46 (suppl 59) OA4479 • Masefield S, Powell P, Kennington E et al. Driving Investment in Asthma Research in Europe: Priorities to Prevent, Cure and Manage Asthma More Effectively. Am J RespirCrit Care Med 193;2016:A2668

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