Underestimated and Not Well Understood
Paula's thoughts on The Power of
Research and Patient Advocacy...
More dollars are being invested in biomedical
research than ever before; there are increasing choices available for treatment,
diagnosis and management of disease and the ranks of survivors are fortunately
expanding across many areas of disease. Notwithstanding, there is much work to
be done in healthcare. For example, this year in cancer alone, the US will see
more than 1.2 million Americans diagnosed with cancer and more than 500,000
Americans will succumb to the
disease. Cancer is now the number one cause of death
for people under age eighty-five and it continues to be a most feared
disease.
Research and clinical science is threatened by shrinking budgets
and increased regulatory hurdles. Science and its’ clinical application are
entering new frontiers of molecular and genetic based medicine that bring a
whole new meaning to cross sector
cooperation and education. Additionally, there are increasing requirements and
expectations -- from the public and patients, funding agencies, stockholders,
providers, payers and philanthropic donors -- for all organizations involved in
biomedical research and care to do a better job in how they interact and
communicate with the public and patient communities.
Knowledge and information management,
communication, and outreach are as essential to translating research across
communities as is the research itself.
Research and Patient Advocacy services such as
what we provide at TRAC provide an honest broker hub linking people across
sectors for progress. Working collaboratively with patients, advocacy groups,
providers, researchers, clinicians, public agencies, public and private
companies, and yes sometimes even with your competition, is essential for
everyone's benefit, none of which is more important than the patients whose
lives we seek to improve and defend.
As a hub in the center of the wheel, research and
patient advocates can facilitate cross community relationships, interaction and
collaboration that helps research programs, improves bottom lines, and
accelerates scientific progress of any organization involved in the biomedical
and healthcare sectors, all of which ultimately benefits the patient
community.
Research and patient advocacy is a specialized niche, not well
understood -- nor well defined -- and definitely non-uniform and therefore is
underutilized or ignored by the many sectors working in the biomedical and
healthcare space. Organizations and companies are totally missing the boat when
they fail to be genuinely active and supportive in this area. Not quite knowing
how to get involved or where to get involved is no excuse for not getting
involved.
C Suite executives who understand the importance
of having a well designed outreach and advocacy strategy and who provide the
leadership and resources to accomplish it, are the same executives who
understand and honor the importance of social responsibility as part of their
company mission, which in turn helps to honor the patients they are working to
serve and what we hope their shareholders would expect.
There is a responsibility and opportunity for
those involved in healthcare and research to invest now in the understanding and
development of research advocacy with a level of commitment and enthusiasm that
is meaningful and sustained.
There is a lot of complicated, exciting science
and technological advancements coming through the pipelines now with more on the
way. The flow will exceed the capacity, meaning, as more choices become
available to patients, their decision making needs will exponentially expand and
one of the unintended consequences will surely be more patient frustration with
the lack of well organized and systematic methods for gathering objective,
credible, information, support and help in understanding the mountain of
information and plethora of options in order to make timely and informed
decisions.
Patients and the general public will be hard
pressed to understand and interpret these advancements, let alone champion them
and participate in the clinical research to build on them. Case in point is that less than 5% of adult patients participate in
cancer clinical trials.
One of the keys to helping the public
embrace, adapt and take advantage of these scientific advancements for their
benefit is through education and communication that is built
on relationships and trust.
All of the communities and sectors
involved in and affected by diseases and ailments have a shared community
objective of driving research progress for patient benefit effectively and
efficiently. Research Advocacy differs some from the more widely known worlds of
Patient and Public Policy advocacy in that Research Advocacy creates
communication and outreach links to help the research and clinical communities
interact and communicate more effectively across all
sectors. Research advocacy
contributes to and benefits from a complementary relationship with patient and
public policy advocacy that leverages their respective
efforts.
Strong research advocacy strategies seek
to:
-
Foster
organizational development of research advocacy efforts and relationships across
sectors to leverage and optimize resources.
-
Foster
organizational capability to improve communication and outreach across sectors
and communities.
The
power of research advocates combined with the power of the research and clinical
community optimizes our shared objective of accelerating scientific progress for
patient benefit. Advocacy is advocacy, whether for research or any other cause, effective advocacy is one of the most rewarding and powerful tools of all.
