76 THE SCIENTIST | the-scientist.com
experience. “There were significant areas
where we did get involved, and that’s not
always the case,” says Turner, who has
been in several other PPE groups for var-
ious research efforts. He adds that “you
get some projects where they seem to
have asked people along to tick the box.”
What set INTERPRESS apart, he says, is
the genuine interest that the researchers
showed in his opinion. “You never felt ill at
ease or that what you wanted to say wasn’t
going to be listened to and received.”
Working comprehensively with
patients was on Kristina Medlinskiene’s
mind too. As a PhD student in phar-
macy research at the University of Brad-
ford in the UK, Medlinskiene knew
that she wanted to incorporate PPE into
her research on factors inf luencing the
clinical use of medications, focusing spe-
cifically on stroke-preventing anticoag-
ulant drugs, but felt there weren’t many
resources for early career scientists. Her
adviser couldn’t offer guidance, and hergrant couldn’t support a patient advisory
group. So she applied for more funding
and reached out to local patient organi-
zations. It turned out to be a sometimes-
frustrating process, and, together with
three other students, Medlinskiene pub-
lished a guide detailing their experiences
for other early career scientists.
Medlinskiene’s persistence ultimately
paid off. After an internet search led her
to a support group for patients with atrial
fibrillation, Medlinskiene formed a three-
person advisory committee. While the
members contributed to many facets of her
work, Medlinskiene specifically wanted
their insight as she crafted her analyti-
cal framework using a social science tool
called thematic data analysis. The team
created a visual map of recurring themes
pulled from her interview transcripts
with patients, which Medlinskiene usedto develop her analysis framework. The
entire exercise “added a richness to the
analysis, having visited different views
and perspectives, because they really saw
this from their own experience of being a
patient accessing a service,” she says.
Medlinskiene, now an associate profes-
sor at Bradford, adds that the experience
brought another, unexpected benefit: a
source of support during the early part of
her career, a time that could otherwise feel
very isolating. “Having your group believe
in your project—because it’s close to their
heart, it’s important to them, it does affect
their daily lives—it motivates you to carry
on even if you feel you’re struggling.”Seeing it through
Several researchers who spoke to The
Scientist note that research of any kind
is most useful when it gets into the hands
of those who can put it into practice. In
addition to helping formulate studies,
PPE is often most valuable when it comestime to disseminate results.
Boddy treats her participants just as
she would any collaborator. Following the
conclusion of INTERPRESS, she worked
with the advisory group to present their
findings at a conference, and they continue
to be involved as coauthors on manuscripts.
Cerebral palsy researcher Wilson has also
presented talks with her participants, and
says that she sometimes sees talks given
solely by patients or members of the pub-
lic who played a role in the research. This
is an opportunity for engagement, as are
commentaries in journals coauthored by
scientists and their public partners. All
these forms of ongoing collaboration and
engagement support PPE as a component
of empirical research.
Members of the public can also be
unexpected sources for sharing results
beyond academic settings. Because manycome to studies through support or advo-
cacy groups, they’re often deeply embed-
ded in their communities, says Rose, and
can use their social networks to amplify
news of a study’s findings. Rose’s social
media presence as The Autistic Advocate,
for example, gives him an audience of tens
of thousands, including both scientists and
members of the public. Having coproduced
research into autism for many years, Rose
says that he’s been able to educate others
about the complex ethical issues surround-
ing the work, issues that Spectrum 10K has
brought to the foreground.
Awaiting the results of the investigation
into Spectrum 10K, Baron-Cohen tells The
Scientist in an email that he has taken much
of the feedback to heart. The team now
recognizes that “we need to consult with a
much larger group, and to ensure that this
group is representative of the many per-
spectives within the autism community.”
The researchers brought in an organiza-
tion that facilitates stakeholder engagement
to oversee their conversations with autistic
people as they work together to restructure
the study’s goals, according to a statement
on the study’s website. The experience of
Spectrum 10K has also changed how the
University of Cambridge’s Autism Research
Centre, which Baron-Cohen directs, will
organize its work, he says. “Large-scale or
controversial studies require large-scale,
ongoing engagement, to be representative of
all the opinions within the diverse commu-
nity. We are now wholeheartedly embracing
these new ways of working.”
Rose remains skeptical as to whether
Spectrum 10K can reboot without running
into many of the same problems, given that
the funding has already been awarded to
pursue specific objectives, but notes that
autism makes a great case study for many
issues in academia, including how PPE
can be done successfully. After a century
of patients being scrutinized by research-
ers far removed from the experience of
the condition they’re studying, “there are
some fabulous autism researchers working
in the field who are now doing coproduced
research,” he says. “We’re moving the field
on dramatically, and that’s because all
those things were missed before.” gYou never felt ill at ease or that what you wanted to say wasn’t
going to be listened to and received.
—Malcolm Turner, pub lic advisor to the INTERPRESS Collaboration