Creating Community to Promote Shared Decision-Making

Throughout ancient history, we have gathered in communities to share stories. Stories change lives, change communities by connecting us with familiar human experiences. They can also elicit a call to action. Think back to a moment sitting around a family table, campfire, or standing on a neighborhood corner listening to someone’s story. Did it leave you with a lasting memory, provoke personal change, or inspire a call to action changing the trajectory of your purpose in life? How do we measure the value of creating community to promote shared decision-making?

Authoring My Own Story Became My Call to Action

My life changed by sharing my own story. I began writing a blog in early 2015 about my second breast cancer diagnosis that occurred in April of 2014. Seven months after a double mastectomy I had successful DIEP flap breast reconstruction using my own tissue. My surgery was performed by a world-renowned microsurgeon who has his own stories to tell.

His stories involve the patients he serves affected by breast cancer. These patients came to his office time after time with the same theme, “If only I had known….” He recognized that lack of information was the missing piece of empowering the patient to take a more active role in their health care decisions. This prompted him to develop an app, a decision tool preparing patients for a shared decision-making conversation during a consult with their physician. These stories prompted change and became his call to action.

The Mentors Who Inspire a Shared Decision-Making Community

I had been writing my blog, my breast cancer story for nearly a year. My microsurgeon, someone I now consider a mentor in my work as a nonprofit leader, presented me with a call to action the year after starting my blog. He encouraged me to open a nonprofit organization. In July of 2016 I started DiepCFoundation.org. His explanation, the Foundation, conceived out of my story would create community and broaden my outreach to promote shared decision-making.

Stories I told about my own health experience and stories from others, stories he heard from his patients, became the impetus of our work together as co-leaders of the WHIS shared decision-making expert team promoting the United Nations Sustainable Development Goal 3 (SDG3), good health and wellbeing. The objective is to empower patients with education by demonstrating the value of the shared decision-making model in health care.

The Responsibility of Creating Community

Scaling a story to reach the correct community becomes imperative if we hope to improve healthcare by promoting the shared decision-making model. The responsibility lies in the curator and creator of community whether this is on a small scale or global scale. A community promoting the shared decision-making model can be a small group sitting together, an online community, or community on a digital platform.

All of these examples of community must have content based on science and evidence-based information to give patients control over their health care decisions. Shared decision-making is a practice proven to improve patient compliance and outcomes in their healthcare and decreases decisional regret.

Sustaining Communities to Promote Shared Decision-Making

When the world around us changes, adapting to shifts during a healthcare crisis like we have experienced during the pandemic is essential to sustain communities. Access to better quality healthcare for marginalized communities has broader economic global implication. Communities who understand and practice shared decision-making in healthcare realize there are other avenues and access to better quality healthcare. We have the ability to reach communities through these various platforms.

This presents us all with a call to action. For me personally, as a nonprofit leader on the WHIS shared decision-making team, I will continue to use the hashtags #patientadvocate #shareddecisioonmaking supporting #sdg3. I will promote various platforms to educate and empower patients with resources and information to make their best health care decisions. It began by creating community to promote the benefits of shared decision-making. I am grateful to the leaders at WHIS and the support of the global community to continue this work.

Disclaimer

References made to my surgical group, surgeon and healthcare team are made because they are aligned with my values and met my criterion after I did research of their practices and success rates. Any other healthcare provider that displays the same skill, compassion education and outreach to patients will be given consideration and recognition on this website.  The information contained on this website is not a substitute for or should be construed as medical advice. Please consult a licensed physician for medical advice.
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About Terri

I am a patient educator and advocate for choices in breast reconstruction after a mastectomy. Statistically, many women are not being informed of their choices due to many factors. Breast reconstruction is a personal choice. Providing information and education about those choices is a patient rite. It is the mission and focus of my work to provide that education and information.