I was privileged to participate in a recent Patient Advocacy Summit, a remarkable event organized by NJ Bio. We heard from many impassioned patients, parents, advocates, and supporters who shared their individual stories—each touching and powerful—with an unmistakable common thread of optimism and determination.
Their commitment to change, progress, and success is inspirational, and for all of us who are lucky to work in patient engagement—or patient involvement—these testimonies make it very clear what matters.
It’s widely accepted that those dealing with a disease or condition trust hearing from those in similar situations. This is especially true in rare diseases because of the small number of cases: Patients and those with the condition are keen to learn from—and share with—others like them.
It is also the case in less common conditions, and much is being done to facilitate this exchange. PCORI (Patient-Centered Outcomes Research Institute) tirelessly involves patients’ voices and insights in trial design and research programs. They believe that providers and healthcare systems can best help patients in their times of need when patients, as well as their caregivers, are fully included in decision making.
Another organization addresses the issue from a different perspective. The National Health Council was established in 1920 to “provide a united voice for people with chronic diseases and disabilities and their family caregivers.” One of their many excellent resources highlights examples of the practicalities of listening to patients: “2017 Chief Medical/Scientific Officers Conference: Lessons Learned and Pathways Forward: Practical Experiences in Patient Engagement: A Portfolio of Case Examples.”
Point of Care Extends Best Practices
In point of care we can extend such best practices. We have the honor to engage and collaborate with patients and their caregivers to understand their lives, not just their conditions. With those insights we can inform and educate others, in turn, helping them manage their own health with verbatim news, insights, and advice and suggestions.
Through collaborative partnerships with patient organizations, individuals, and their caregivers, we can understand needs and then prepare patients for their next visit with practical tips and suggested conversation starters. The time spent in the examination room with the physician, nurse practitioner, or physician assistant offers an intimate, uninterrupted opportunity for the patient and healthcare professional to have a one-on-one dialogue. Patients who are educated and empowered are poised to take full advantage, setting the stage for a productive conversation and the best possible health outcome.
