CA SE STUDY NO. 6
Institute for Neurodegenerative
Disorders Physician Referral
Network
Physicians play a critical role in facilitating patient participation
in clinical research. 17 In fact, a poll by Research!America
found that 72 percent of respondents would participate in
a trial if their doctor recommended it. 18 However, primary
care physicians and neurologists often are not involved in
the recruitment strategy for clinical trials. Historical barriers
have made engagement with physicians challenging. They
may fear losing care of patients to clinical trial site providers,
be unfamiliar with the trial and principal investigator, or have
concerns about jeopardizing the doctor-patient relationship. 19,20
One approach to building trust and overcoming these obstacles
is for research institutions and principal investigators to actively
engage with community physicians. Reaching out to local
physicians to increase knowledge about trials and generate
confidence can facilitate referrals.
The Institute for Neurodegenerative Disorders (IND)
serves as a prime example of how research institutions can
better engage with community physicians to build referral
networks. Founded in New Haven, Connecticut, in 2001, IND
develops diagnostic tools and treatments for individuals with
neurodegenerative disorders. Its founders, Kenneth Marek, MD,
and John Seibyl, MD, bucked the traditional research institution
model. Foregoing regular clinic hours, they focused instead
entirely on clinical research studies. This novel approach meant
that trials conducted at IND had to rely heavily on patient
referrals from community clinicians. Through several years of
dedicated outreach to clinicians in the community, IND built
a referral network of neurologists located across the state of
Connecticut. As a result, the top two referral sources for trials
at IND are: 1) new patient referrals from community clinicia ns,
and 2) a database of patients referred to past IND studies. This
resource of patient referrals has made IND a top recruiting site
for Parkinson's studies, including the Parkinson’s Progression
Marker Initiative (ppmi-info.org).
The Institute of Neurodegenerative Disorders may seem
uniquely positioned for success in the development of a
physician referral network, but Director of Clinical Research
David S. Russell, MD, PhD, believes that traditional research
institutions can easily replicate these efforts. Dr. Russell outlines
a three-tiered strategy to facilitate engagement and long-term
relationship building among community physicians:
+ + Conduct Due Diligence
– – Learn about the practices in your community.
To maximize your time and effort, do online research
about local practices. Begin with neurology clinics that
see individuals with Parkinson's disease (PD). Identify
a neurologist, physician assistant or nurse practitioner
who regularly treats PD patients. Consider connecting
with primary care physicians and allied health care
professionals, but prioritize neurologists as they more
frequently engage with PD patients. For IND, neurologists
historically have provided the most referrals.
– – Understand the needs of community clinicians. Ask
physicians about challenges they may be facing in their
practices. For example, a community neurologist may be
having difficulties diagnosing a patient. Offer to provide an
expert second opinion and send your recommendations.
Point out research studies that include procedures and
assessments that physicians may find useful to treat
their patients. For instance, Dr. Russell has found that
community physicians often seek DaTscans for their
patients. In addition, explain the various patient wellness
programs available at your site, such as support groups,
PD education events and fitness classes. Patients can learn
about recruiting trials at your site through these programs.
Continued on page 28
http://www.appliedclinicaltrialsonline.com/print/343713?page=full
https://www.elsevier.com/connect/poll-majority-of-americans-would-participate-in-clinical-trials-if-recommended-by-doctor
19
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3782313/
20
Michaels, Margo, et al. “Impact of Primary Care Provider Knowledge, Attitudes, and Beliefs about Cancer Clinical Trials: Implications for Referral, Education and Advocacy.”
Journal of Cancer Education, vol. 30, no. 1, 2015, pp. 152-157, Research Library,
17
18
Chapter 3 — Building a Recruitment Strategy and Toolkit
27