other ways of engaging, including home
visits and phone calls. Other researchers
noted similar adjustments, such as mail-
ing paperwork rather than emailing it, as
some patients, particularly from older gen-
erations, are not computer literate or don’t
have access to the necessary technology.
“For us, that’s really changed some of the
things that we implement in our work,”
Wilson notes.Collaborative research
While many members of the public get
involved in PPE to share their experiences,
they often lack scientific backgrounds—
but in fact that is part of what makes for
fruitful research partnerships. Research-
ers who have incorporated PPE into their
work tell The Scientist that they are often
surprised at how helpful patients are in
various aspects of the research process.
Kate Boddy, a research fellow at the
University of Exeter whose job involves
helping scientists bring PPE into their
studies, understands this better than
most. Often, she says, the best fits are those
where participants can comment on “tangi-
ble things” such as consent documents. But
she’s been looking for other ways to solicit
their involvement and has incorporated
PPE into projects that push the normal
bounds of patient and public involvement.
Boddy partnered with general prac-
titioner Christopher Clark in 2014 for a
meta-analysis looking into whether differ-
ences in blood pressure between a person’s
arms might indicate a risk for cardiovascu-
lar disease. Because the project, called the
INTERPRESS Collaboration, relied on
existing studies, it didn’t require recruit-
ment, making it an unusual choice for
PPE. Yet Boddy included three members
of the public as advisors. None of them
had conditions relevant to the project,
but they had attended an early presenta-
tion about the study that solicited public
feedback. In addition to drafting a plain
-language summary for the public and
invitation letters to the authors of studies
whose data Clark wished to include, Boddy
says, the trio also evaluated the appraisal
tool, called QUIPs, used to assess studies
for inclusion in INTERPRESS.Thanks the public advisors’ involve-
ment, the research team quickly realized
that some aspects of QUIPs left room for
improvement—namely, that there were
redundancies between the published tool
and the ways that the INTERPRESS
team would analyze the studies. The con-
versations between the scientists and
the PPE group led to significant changes
in how the appraisal tool was applied,
and therefore how the papers were ulti-mately analyzed for inclusion in the meta-
analysis. Although some researchers view
public involvement as only minimally help-
ful for meta-analyses, “now that INTER-
PRESS is completely wrapped up, I can say
that [it] has been really significant in a way
that perhaps goes against that perception,”
says Boddy.
Malcolm Turner, one of the three pub-
lic advisors on the INTERPRESS project,
says that participating was a uniqueTIPS FOR MEANINGFUL PUBLIC ENGAGEMENTBELIEVE PATIENTS. One of the benefits of including public and patient engagement (PPE) in
research is the added perspective that personal experience can bring. But patients often report
having their experiences dismissed by doctors or researchers, according to Stanford University
geneticist Ronald Davis, whose son was diagnosed with myalgic encephalomyelitis/chronic
fatigue syndrome (ME/CFS) after visiting nearly a dozen doctors. The most fruitful collaborations,
notes Moffitt Cancer Center tumor biologist Eric Lau, arise when scientists take the concerns of
patients seriously.DON’T TOKENIZE. As more funding agencies require PPE, reports have arisen of researchers involv-
ing the public only as a box-checking exercise, notes Kate Boddy, a PPE expert at the University of
Exeter. She recommends engaging in meaningful conversations and respecting the time and effort
of your public advisors. Many established guidelines recommend compensating participants.BRING THEM IN EARLY, INVOLVE THEM THROUGHOUT. True coproduced research requires
treating patients and other members of the public as equal collaborators and actively seeking their
input at each step of the research process, says autism advocate Kieran Rose, who coproduces
research with academics studying the disorder. Kristina Medlinskiene, an associate professor of
pharmacy research at the University of Bradford, says this can mean soliciting input during design,
recruitment, analysis, and dissemination of research.KEEP COMMUNICATION FLOWING. Yana Wilson’s work with patients with cerebral palsy and
their families at the Cerebral Palsy Alliance Research Initiative in Australia has reinforced how
much people appreciate transparent, ongoing communication with researchers. Rather than
updating patients periodically, take the time to consult with them regularly, she says, and always
be courteous, consistent, and caring in your feedback.BE FLEXIBLE. Many researchers note that the time commitments required to do PPE right remain
a barrier to more widespread adoption among scientists. Budget time to apply for grants to include
PPE in a project, and to meet with your partners. Christopher Clark of the University of Exeter’s
INTERPRESS Collaboration held special meetings with his public advisory group before each lab
gathering to prepare them for what would be discussed, says INTERPRESS public advisor Malcolm
Turner. This helped avoid overwhelming nonscientists on the team with new information.BE PROACTIVE IN SEARCHING FOR RESOURCES. Many universities are hiring staff to work
with researchers who want to incorporate PPE. If your institution doesn’t yet have this type of
department, consider reaching out to local patient or advocacy groups specializing in the disease
or disorder you study, says Medlinskiene. They can be useful in recruiting patients and may also
point you toward other helpful resources.ACKNOWLEDGE PPE INVOLVEMENT IN MANUSCRIPTS AND PRESENTATIONS. Medlinskiene
recalls how difficult she first found it to identify studies that included PPE, even when she knew the
authors had involved the public in their work. She recommends being explicit about it in papers,
presenting posters or talks alongside public collaborators at conferences, or coauthoring commen-
taries in journals. Boddy notes that this approach lends legitimacy to the work, while bringing PPE
to the attention of other academics.CAREERS74 THE SCIENTIST | the-scientist.com