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.”