Inclusive collaboration key to successful patient advocacy
Click Here to Manage Email Alerts
When I was asked to pen this op-ed on patient advocacy, I felt honored and excited. But soon I was paralyzed by the reality of sharing my perspective in a climate in which each word could be scrutinized, criticized and judged. I was afraid.
While I wrote and rewrote what I wanted to say over and over in my head, irrational thoughts of cancel culture, professional sabotage and sheer embarrassment took over. I stopped myself when I realized this fear of being scrutinized, criticized and judged is something many patients have shared with me over the years. And it is this fear, they say, that prevents them from advocating for themselves within the health care system or even seeking care in the first place. But this is only one reason patients need a collective voice.
What about patients who feel unheard, overlooked, marginalized and are afraid — or unsure how — to speak up in our health care system today?
What about patients who cannot access care or do not know they are at risk for colorectal cancer, inflammatory bowel disease, liver disease or another gastrointestinal condition?
What about patients who are living with a chronic GI condition and cannot get insurance approval or afford the recommended medical treatment?
What about caregivers who are facing their own challenges, both at home and in trying to navigate a confusing and often frustrating health care system?
What about patients who have given up or are suffering in silence?
While these scenarios are general, they each represent examples of unique angles or areas of focus for advocacy. All patients need someone in their corner who fully understands them — their needs, fears, challenges and experiences — and gives them a powerful unified voice in all areas of the health care ecosystem. This includes research, policy, clinical guidelines, education, diagnosis and treatment options, awareness and access to care.
Diversity and inclusion are at the forefront of many patient advocacy efforts that have a specialized focus on a particular patient group. But I encourage my fellow patient advocates and organizations to recognize the importance of inclusive collaboration within the larger GI community. We all have much to learn from one another, as well as resources, networks and expertise that could be leveraged and shared for the benefit of all patients.
Gastroenterology is blessed with an increasing number of individuals and organizations dedicated to improving the lives of patients. But what is most notable is the inherent role of the GI clinician as a patient advocate. I do not know of another specialty in which clinicians are so vested in advancing patient care, not just for their patients but all GI patients. A brief scan of any social media channel demonstrates the variety of patient education and advocacy activities GI clinicians are involved in beyond the office visit or hospital setting, and that is just one example.
Let us also recognize that the number of patient advocacy groups and individuals who work as patient-advocates has increased at least tenfold — and likely a lot more — over the past 20 years, with most every GI condition, demographic and interest represented in some way. Many are working in the trenches, at the community level, where they have built trust and developed strong relationships along with deep knowledge of the patients they serve. These grassroots groups are patient advocacy’s hidden gems.
Let us find a way to get to know these groups and work together. In the past few years, specialized advocacy groups like the Association of Black Gastroenterologists and Hepatologists, Color of Crohn’s & Chronic Illness and IBDesis have emerged to give overlooked populations not only a voice in the GI space but also a champion for their unique and unmet needs.
I have spent nearly two decades deeply committed to digestive health education and to empowering all patients with access to expertise and resources. I have witnessed the steady adoption of a more patient-centric approach within the GI space not only from the health care side but also from professional societies and industry.
And while my life’s work is mission driven and purposeful, I am not an expert in every aspect of gastroenterology, patient demographic or health journey. I am not an expert in the cultural, ethnic, religious and gender identity nuances that must be recognized, understood and taken seriously if we truly want to improve our health care system in ways that are driven by the uniqueness of the patients it serves.
But I am willing to learn and do whatever I can to work collaboratively with the organizations, people and industry leaders who know way more than I do.
Patient advocacy is a broad term with different meanings to each of us — not only is this OK, but vital if we are to disrupt the status quo. Why? Because we are not all experts in everything and disruption cannot happen if we all have the same perspective.
We must embrace the unique mission and expertise of these advocacy organizations and include them in our own advocacy efforts if we are serious about making much-needed changes to our health care system and to society.
- For more information:
- Jacqueline Gaulin is founder of Gastro Girl and GI OnDEMAND, which is a joint venture between Gastro Girl Inc. and ACG. She also is creator and host of the Gastro Girl Podcast. Gaulin can be contacted at jgaulin@gastrogirl.com.
Collapse
Read more about
Click Here to Manage Email Alerts