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Serving as the only patient representative in the group,
Wiseman sat alongside a nurse coordinator and 25 clinicians,
to discuss his thoughts and provide input on the trial. Two of
his biggest critiques of clinical trials are the time requirement
and strict schedules to which participants must adhere. Only
operating during the work-week schedule of 9 a.m. to 5 p.m.,
trials create an inconvenient and almost impossible-to-meet
demand on a person’s schedule. He suggested using
technology, such as video conferencing, texting and phone calls
to allow for check-ins and updates with participants instead of
requiring soley in-person meetings. Greater flexibility would
allow for more participation. Wiseman also highlighted the
disconnect that can occur between participants and clinicians
on the formatting of questions. He believes having a diverse
group of people involved in the formulation of questions
is important to identify any misinterpretations or
misunderstandings ahead of time.
He provided an example of a question that referenced a
participant’s sexual activity and highlighted the many
interpretations that could come from that question given an
individual’s personal view of what constitutes sex. Another
one of Wiseman’s concerns is that in all of the clinical trials
he’s seen have been designed for men, despite the fact women
comprise a significant portion of the bleeding disorders popu-
lation.
If you’ve ever looked into participating in a clinical trial, you
might agree with Wiseman when he says that the process is
not easy to navigate. He describes the process of determining
which clinical trials to participate in as convoluted,
emphasizing there is no one-stop shop for comprehensive
information.
“Yes, there is a website [with information], but then to find out
if your HTC is [participating], and if they aren’t, you have to try
and to get them in: road blocks galore.”
There have been times in his life when he would look at the
medical staff in the hospital or hemophilia treatment center
and think ‘they don’t get it, the pain I’m going through.’ But
the experience of sitting in on the meeting with the clinicians,
“opened my eyes to realize that they are people too. People
trying to make a difference.”
He found his participation in the trial’s design was personally
rewarding and feels as though he was able to make an impact
with his thoughts and contributions. More than a year before
Bobby participated in research and so can you!
Are you registered in our Community Research Portal?
Register today at www.hemophiliafed.org/research
8 Dateline Federation | Fall 2018
he was asked to participate in the design of the clinical trial
was when Wiseman and his hematologist simply began talking
about the possibility of participating in one. Wiseman, the one
to initiate the conversation with a peaked interest, didn’t want
to make a quick decision to participate in a trial that ultimately
didn’t help with his own hemophilia care and might then
disqualify him from being considered for additional trials.
With so many companies entering the bleeding disorders
realm, they decided to put the conversation on hold for a year to
see how the landscape might change. When the two picked up
the conversation again and Wiseman was presented with all of
the clinical trials for which he might be considered, he felt ready
to participate.
“My hematologist truly became a partner in the process of
exploring options, learning about the trials, thinking through
the outcomes, and what they would do for my life,” he said.
While this experience was a first for him, Wiseman is of
course no stranger to the bleeding disorders community. He is
currently serves as co-director of Hemophilia Foundation of
Northern California’s annual summer camp program which
just celebrated its 40th anniversary. He has been involved 37
of those 40 years. He serves as the chair of the summer camp
planning committee, coordinating with all four local HTCs
and the two national advocacy organizations, HFA being one
of them. Wiseman was the honorary chair of the HFNC walk,
coordinator of the Blood Brotherhood program for Central
California Hemophilia Foundation and former chair of World
Federation of Hemophilia’s international youth congress.
With 47 years of hemophilia care under his belt, he’s been on
only four products. When longer lasting, extended-life products
were coming out he was skeptical. He recalls asking friends in a
half-joking, half-serious tone “are you growing any extra limbs