TRAC is a leader in the development of cross-sector strategies and initiatives aimed at strengthening communication, leadership, capacity, relationships, and improving outcomes for all. 

Thoughts on Advocacy

The Power of Research Advocacy and Importance of Working With the Community:

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.
  • There is great unmet need to develop and sustain more effective outreach programs
  • Develop better methods to disseminate research results and progress
  • Educate and empower the sectors you serve
  • Work to bridge the gaps that exist in and outside the walls of your organization and your science

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.