cerns leveled at the initiative, and has so
far requested undisclosed changes to the
project’s supporting documentation. In an
update last November, an HRA spokesper-
son stated that “some of the issues raised
as part of the complaints process could
have been considered during the original
review” of the study.
If the story of Spectrum 10K is a cau-
tionary tale, it is also a lens. Increasingly,
research is done with public and patient
engagement, or PPE (sometimes called
public and patient involvement), as fund-
ing agencies, research organizations, and
academic institutions adopt the practice.
The benefits, as explored in several studies,
include injecting fresh perspectives into
research, tapping new sources for recruit-
ment and dissemination of findings, and
giving patients a say when it comes to what
scientists study and how. Science produced
in this way is a collaboration between
researchers and the public, one in which
researchers are encouraged to compensate
engaged members of the public and patient
communities for their knowledge and to
treat them as equal members of the team.
“Science is so important,” Rose says,
“But what’s more important is doing this
the right way.”
From the ground up
One of the immediate benefits of PPE
is that it often stimulates new ideas and
energizes scientists by humanizing their
work, says Eric Lau, a tumor biologist
at Moffitt Cancer Center in Florida. His
research on tumor biology, particularly in
melanoma, rarely “emotionally engages”
him, he says, but a few years ago Lau’s hus-
band, a clinician, asked if he could bring a
patient for a tour of the lab. Lau expected
to leave the young woman, who had an
aggressive form of brain cancer, feeling
more hopeful. Instead, “she f lipped the
whole situation around,” he says, by open-
ing up about her own experiences with not
just the physical aspects of cancer, but the
emotional ones too. “By the time she was
done, my whole lab was in shambles. But
for the next couple of months, I have never
seen them move faster.”
Lau, who hadn’t previously engaged
much with patients, took away a desire
to bring basic scientists and patients
together as collaborators. “We realized
very quickly [that] if one experience had
this profound, lasting effect, we should
be making this experience available to asmany labs as possible.” Partnering with
PPE specialists at Moffitt, Lau created a
series of ongoing forums where patients
share their stories—guided by patient
advisors to help focus their message—
and scientists brainstorm how best to fold
those experiences into their work. Ini-
tially held in person, these meetings went
virtual after the start of the pandemic.
As a result of these interactions, cancer
researchers at Moffitt are thinking about
their research in new ways, Lau says. For
example, basic scientists often develop
tools to kill tumor cells without consider-
ing the possible side effects of treatment,
but after one patient noted the “brain fog”
that accompanied her lung cancer treat-
ment, researchers at the center began
shifting from broadly toxic treatments
such as chemotherapy to targeted thera-
pies that spare brain cells.
The direction of Lau’s research has
also been inspired by patients he met at
these events. He recently started probing
how testosterone drives melanoma after
attending a forum highlighting men with
breast cancer. For some reason, breast
cancer survivors of any gender are at an
increased risk of developing melanoma,and vice versa, compared to the general
population, he says. “I would say there’s
maybe four or five groups in the whole US
that are studying this topic, but it’s actu-
ally a... profound biological effect.”
In addition to spurring new ideas, PPE
can also sharpen study planning, says Yana
Wilson, a genomics research officer at the
Cerebral Palsy (CP) Alliance Research Ini-
tiative in Australia. “Asking families what
they’re interested in is really helping drive
our strategy,” she says. Wilson and her col-
leagues recently conducted a survey of CP
patients and their families on their atti-
tudes toward genomics research. The find-
ings suggest that many patients support
the work and are understanding of prickly
aspects like data sharing, but some think
that scientists often stumble when crafting
public documents such as study informa-
tion forms and privacy policies.
Privacy in particular is a recurring
issue. It can be daunting, Wilson admits,
to educate people about all the ways their
data could be used, and the forms that end
up being sent to patients typically contain
pared-down descriptions. Instead, Wilson
and her nonscientist partners have devel-
oped a detailed policy that lays out explicit
conditions under which information can
be shared—patients might choose to
release their data within a particular insti-
tution or for certain purposes, for exam-
ple—and Wilson encourages researchers
to speak with their study participants and
reassure them that they have a say in how
their information will be used. “Sharing
data is so important for the work that we
do, and I’m always going to support that,
but I want to do it in the best way possible,
where families feel like their information
is being respected,” Wilson says.
That level of respect also extends to
other parts of her protocols. For her dis-
sertation, Wilson studies families in which
multiple children develop conditions such
as CP and autism. Working with patients
means that Wilson has ironed out small
procedural details before they become sig-
nificant wrinkles. Asking a beleaguered
parent to bring two young children to a
hospital for sample collection or testing
might dissuade them, so she strategizesSharing data is so important for the work that we do... but I
want to do it in the best way possible, where families feel like
their information is being respected.
—Yana Wilson, Cerebral Palsy Alliance
SPRING 2022 | THE SCIENTIST 73