Presentation to Cochrane Symposium, Advocating For Evidence. Dublin, Ireland, April 2015.

1. Better Knowledge. Better Health?
Making Research Relevant,
Accessible, and Prioritized to
Patient Needs.
Marie Ennis-O’Connor
@JBBC

2. INTRO
#CochraneAdvocate

6. Equipped
Enabled
Empowered
Engaged

7. Shared Decision Making (SDM) is the
conversation that happens between a
patient and their health professional
to reach a healthcare choice together.

9. • Clinicians have an ethical imperative to
share important decisions with patients.
• Patients should have access to accurate,
evidence-based information about
treatment options and the uncertainties,
benefits and harms of treatment.

10. More than a third of
people living with a
long-term condition
said they were not
given helpful
information
about their
condition
when first
diagnosed.
Patient Information Forum

11. “Central to the vision of patient centred care, is
the principle of providing a wide range of
appropriate, accessible and timely information
enabling people to make informed decisions”
NHS England, Liberating the NHS: No decision about me, without
me, December 2012

14. .
Patients can now gain access to citations of more than 12
million medical articles online.
online

19. Filtering the information overload for better
decisions
"Where is the knowledge we have lost in
information?“ TS Eliot "The Rock

20. In an age of digitized health
information we still need context and
expertise to interpret the research.

21. Role of systematic review in making
research relevant, accessible, and
prioritized to patient needs.

22. 25,000 biomedical journals in print.
8,000 articles published per day.
All studies not equally well designed or interpreted.

23. We Need A Study of Studies
• To summarize evidence from studies that
address a specific clinical question;
• To explain differences among studies on the
same question ;
• To determine implications for healthcare
policy and practice;
• To limit bias.

24. The usefulness to any source of
information is equal to its relevance,
multiplied by its validity, divided by
the work required to extract the
information.
Slawson DC, Shaughnessy AF, Bennett JH. Becoming a medical information master:
feeling good about not knowing everything. J Fam Pract 1994;38:505-513.

25. Relevant
Valid
Accessible
Prioritized to patient
values and needs
Effective, reliable, actionable
Timely, accessible,
understandable

26. Relevance
“To be relevant we must select questions
that need answering, and plan our reviews
to make sure the right information is
gathered and presented to answer those
questions”.
Cochrane Training

28. How do you know which question is
actually relevant and useful to patient
values and practice contexts?

29. Ask The Patient!

30. “When it comes to managing a health condition, how do
we know what matters most unless we ask those living
with it? Knowing what matters most is vital for good
stewardship of our finite resources to fund research,
ensuring that work goes into seeking answers to questions
that patients most want answered.”
Sarah Chapman, Evidently Cochrane

31. The patient perspective is paramount.
Don’t just include at peer review stage.
Include patient voice from the outset
and throughout the review process.

32. “If a patient/consumer group don't review your
proposal you might miss that one important outcome
measure. Many researchers are fascinated by P-values
and statistical significance. In clinical research, the
Patient is the only P we should be evaluating. “
Pete Carr, Cochrane Reviewer

35. “If patient engagement were a drug, it would be
the blockbuster drug of the century and
malpractice not to use it” ~ Leonard Kish

36. The Consumer's Role in
The Cochrane Collaboration
• Co-applicant on research grant applications
• Provides perspective by commenting on the "Plain Language
Summary" of the review
• Commenting on a Cochrane review of the best evidence on a
healthcare intervention, prior to publication
• Commenting on protocols to ensure that outcomes relevant to
consumers are included
• Preparing review summaries in plain language
• Searching journals
• Translation of reviews
• Co-authoring systematic reviews of best evidence
Acknowledge appropriately in the published review

38. The James Lind Alliance brings
patients, carers, and clinicians
together to prioritise research
questions.

39. Relevant
Valid
Accessible
Prioritized to patient
values and needs
Effective, reliable, actionable
Timely, accessible,
understandable

40. “To him who devotes his life
to science, nothing can give
more happiness than
increasing the number of
discoveries, but his cup of
joy is full when the results
of his studies immediately
find practical applications.”
—Louis Pasteur
2. Validity

41. Who is likely to use intervention?
What are their unique needs?
How they are likely to use it?
What resources, and infrastructure
exist to support intervention?
Summarise the existing evidence
Address uncertainty
Present findings in a way that
informs SDM
Knowledge Translation
Dissemination
Highlight gaps in the evidence
To help people
understand and
support decision
making

42. “The success of my research outcomes depends on the
success of the patient outcome. They are the key cog in
the evidence wheel. At least one of the research
proposals primary outcomes should directly impact on
patient care. “
Pete Carr, Cochrane Reviewer

45. Relevant
Valid
Accessible
Prioritized to patient
values and needs
Effective, reliable, actionable
Timely, accessible,
understandable

47. “Simple can be harder than complex.
You have to work hard to get your
thinking clean to make it simple. But
it’s worth it in the end, because once
you get there, you can move
mountains”

51. Timeliness

52. The Lancet 2009 374, 86-89DOI: (10.1016/S0140-6736(09)60329-9)
Copyright © 2009 Elsevier Ltd
As much as 85% of research
investment wasted

53. “Research results should be easily accessible to people who need
to make decisions about their own health…Why was I forced to
make my decision knowing that information was somewhere but
not available? Was the delay because the results were less
exciting than expected? Or because in the evolving field of
myeloma research there are now new exciting hypotheses (or
drugs) to look at? How far can we tolerate the butterfly
behaviour of researchers, moving on to the next flower well
before the previous one has been fully exploited?”
Alessandro Liberati, BMJ 2004

55. Dissemination

56. Disseminating
Research
Active Model
Views people as active change agents
rather than passive recipients of
information.
Spreading research through social
networks
Passive Model
Providing access to information, but
relying on potential users to find the
information themselves.

57. The Health Foundation: Spreading Improvement Ideas accessed at www.health.org.uk
Articles
Conferences
Involving leaders
Collaboratives
Social Media

63. • Twitter forms communities
of interest
• May help you clarify your
ideas
• Easy to use
• Know your Twitter Ps & Qs!

66. • A tweet chat is a
live Twitter event.
• To filter all the chatter
on Twitter into a single
conversation a hashtag is
used.
• A set time is also established
so that the moderator, guest
or host is available to engage
in the conversation.
• Transcript of tweets available
after the chat.

71. Malcolm Gladwell
The Law of the Few

73. Facebook can reach targeted groups
But issue of trust and credibility

76. Multiple exposure to the same message can
increase the likelihood that information is shared.

78. Create content
Track across
multiple platforms
Engage
Measure results
Repeat
Social Media
Iterative
Process

79. A Challenge For You

80. “The patient has
been lost in
industrial scale
production of
guidelines.”
Neil Maskrey

81. Image: www.delta7.com