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Sesquipedalians versus Hippopotomonstrosesquipedaliophobes: It’s time to make research accessible for all

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Simon R. Stones
Simon R. Stones

This presentation was delivered at the 8th European Meeting of ISMPP 2019, as part of a panel discussion titled: Maintaining Our Core Strength: Driving Publication Integrity Through Leadership

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2019 EUROPEAN MEETING OF ISMPP 1 22-23 January 2019 • etc.venues, 155 Bishopsgate • London, UK Sesquipedalians versus Hippopotomonstrosesquipedaliophobes: It’s time to make research accessible for all Simon R. Stones Patient Advocate and Consultant @SimonRStones #ISMPPEU19
2019 EUROPEAN MEETING OF ISMPP 2 Simon R. Stones Award-winning patient leader. Patient and carer advocate. Expert by experience. Freelance consultant. Charity representative. Qualitative researcher. You can find me at: @SimonRStones www.simonstones.com
2019 EUROPEAN MEETING OF ISMPP 3 Sesquipedalians People who love long words. 2019 EUROPEAN MEETING OF ISMPP 3
2019 EUROPEAN MEETING OF ISMPP 4 Hippopotomonstrosesquipedaliophobes People who fear long words! 2019 EUROPEAN MEETING OF ISMPP 4
2019 EUROPEAN MEETING OF ISMPP 5 2 0 1 9 E U R O P E A N M E E T I N G O F I S M P P Who is going to benefit from research?
2019 EUROPEAN MEETING OF ISMPP 6 Finding accessible, credible and accurate information • People living with health conditions are interested in scientific literature, but many cannot understand it. • Looking for a needle in a haystack – information is often difficult to find, can be inaccurate and/or biased. • Limited time with healthcare professionals can hinder the discussion about research. Biosimilar vs Biologic “Evidence-based resources from credible sources should be easy to access and free for the people who need it.”
2019 EUROPEAN MEETING OF ISMPP 7 Journals with the ‘patient’ audience in mind Research Involvement and Engagement Research For All Focus on patient and wider involvement and engagement in research, at all stages. Co-produced by all key stakeholders, including patients, academics, policy makers and service users. researchinvolvement.biomedcentral.com publicengagement.ac.uk/nccpe-projects-and-services/research-all-journal Contributors and readers are from both inside and outside of higher education. It stimulates discussion about the effectiveness of engagement with researchers, research outcomes and processes.
2019 EUROPEAN MEETING OF ISMPP 8 Plain language summaries • Make data more accessible – science can be communicated to any audience if pitched at the right level. • You need to think about your audience, what they know, and what interests them? • Ditch the jargon, and instead explain complex concepts. • Explain what the study is about and what was found, and why this matters. • Plan for wider dissemination from the start, not just as a side thought at the very end.
2019 EUROPEAN MEETING OF ISMPP 9 Plain language vs Plain English vs Something else…? • Is a plain language summary in English sufficient? • Is written text alone sufficient? • Can accessible publications be both credible and creatively designed? Envision Pharma (2018). Search of PubMed (04 December 2018).
2019 EUROPEAN MEETING OF ISMPP 10 Making recommendations/guidelines more accessible EULAR (2019). EULAR Recommendations: Lay versions. Available from: https://www.eular.org/lay_recommendations.cfm
2019 EUROPEAN MEETING OF ISMPP 11 Different levels of engagement Patient engagement and involvement in publications (not just journal articles) can take many different levels, bespoke to a given situation… The world of science has changed. Disseminating to peers alone is unlikely to get research outputs the notice and reach that they deserve! Expert patients and advocates Patients and carers Patient organisations and consortiums General members of the public
2019 EUROPEAN MEETING OF ISMPP 12 2 0 1 9 E U R O P E A N M E E T I N G O F I S M P P There is a need for relevant, objective and accessible information so that people can understand and interpret findings. The environment is changing – it’s not so much ‘why’, but ‘how’ we best reach to wider groups of people. Transparency builds trust. People have a right to be able to access research that may be relevant to them. The provision of quick and easy access to accurate information could help to drive shared decision making.
2019 EUROPEAN MEETING OF ISMPP 13 2 0 1 9 E U R O P E A N M E E T I N G O F I S M P P “Tell me and I forget, Teach me and I remember, Involve me and I learn.”

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Sesquipedalians versus Hippopotomonstrosesquipedaliophobes: It’s time to make research accessible for all

  • 1. 2019 EUROPEAN MEETING OF ISMPP 1 22-23 January 2019 • etc.venues, 155 Bishopsgate • London, UK Sesquipedalians versus Hippopotomonstrosesquipedaliophobes: It’s time to make research accessible for all Simon R. Stones Patient Advocate and Consultant @SimonRStones #ISMPPEU19
  • 2. 2019 EUROPEAN MEETING OF ISMPP 2 Simon R. Stones Award-winning patient leader. Patient and carer advocate. Expert by experience. Freelance consultant. Charity representative. Qualitative researcher. You can find me at: @SimonRStones www.simonstones.com
  • 3. 2019 EUROPEAN MEETING OF ISMPP 3 Sesquipedalians People who love long words. 2019 EUROPEAN MEETING OF ISMPP 3
  • 4. 2019 EUROPEAN MEETING OF ISMPP 4 Hippopotomonstrosesquipedaliophobes People who fear long words! 2019 EUROPEAN MEETING OF ISMPP 4
  • 5. 2019 EUROPEAN MEETING OF ISMPP 5 2 0 1 9 E U R O P E A N M E E T I N G O F I S M P P Who is going to benefit from research?
  • 6. 2019 EUROPEAN MEETING OF ISMPP 6 Finding accessible, credible and accurate information • People living with health conditions are interested in scientific literature, but many cannot understand it. • Looking for a needle in a haystack – information is often difficult to find, can be inaccurate and/or biased. • Limited time with healthcare professionals can hinder the discussion about research. Biosimilar vs Biologic “Evidence-based resources from credible sources should be easy to access and free for the people who need it.”
  • 7. 2019 EUROPEAN MEETING OF ISMPP 7 Journals with the ‘patient’ audience in mind Research Involvement and Engagement Research For All Focus on patient and wider involvement and engagement in research, at all stages. Co-produced by all key stakeholders, including patients, academics, policy makers and service users. researchinvolvement.biomedcentral.com publicengagement.ac.uk/nccpe-projects-and-services/research-all-journal Contributors and readers are from both inside and outside of higher education. It stimulates discussion about the effectiveness of engagement with researchers, research outcomes and processes.
  • 8. 2019 EUROPEAN MEETING OF ISMPP 8 Plain language summaries • Make data more accessible – science can be communicated to any audience if pitched at the right level. • You need to think about your audience, what they know, and what interests them? • Ditch the jargon, and instead explain complex concepts. • Explain what the study is about and what was found, and why this matters. • Plan for wider dissemination from the start, not just as a side thought at the very end.
  • 9. 2019 EUROPEAN MEETING OF ISMPP 9 Plain language vs Plain English vs Something else…? • Is a plain language summary in English sufficient? • Is written text alone sufficient? • Can accessible publications be both credible and creatively designed? Envision Pharma (2018). Search of PubMed (04 December 2018).
  • 10. 2019 EUROPEAN MEETING OF ISMPP 10 Making recommendations/guidelines more accessible EULAR (2019). EULAR Recommendations: Lay versions. Available from: https://www.eular.org/lay_recommendations.cfm
  • 11. 2019 EUROPEAN MEETING OF ISMPP 11 Different levels of engagement Patient engagement and involvement in publications (not just journal articles) can take many different levels, bespoke to a given situation… The world of science has changed. Disseminating to peers alone is unlikely to get research outputs the notice and reach that they deserve! Expert patients and advocates Patients and carers Patient organisations and consortiums General members of the public
  • 12. 2019 EUROPEAN MEETING OF ISMPP 12 2 0 1 9 E U R O P E A N M E E T I N G O F I S M P P There is a need for relevant, objective and accessible information so that people can understand and interpret findings. The environment is changing – it’s not so much ‘why’, but ‘how’ we best reach to wider groups of people. Transparency builds trust. People have a right to be able to access research that may be relevant to them. The provision of quick and easy access to accurate information could help to drive shared decision making.
  • 13. 2019 EUROPEAN MEETING OF ISMPP 13 2 0 1 9 E U R O P E A N M E E T I N G O F I S M P P “Tell me and I forget, Teach me and I remember, Involve me and I learn.”