The Evolution of Health Advocacy and Health Activism

Over the past decade, the landscape of health advocacy has undergone a remarkable transformation. From the way we perceive healthcare to the tools we use for activism (because, let’s face it, health advocacy is activism).

When I look back, I didn’t have a word for what I was doing online, sharing my journey as a caregiver, the face of health advocacy has been redefined. Right now we are stepping into a new era of wellness, and it is essential to reflect on the progress made, the challenges faced, and the limitless potential of this growing movement.

Healthcare workers were the first say and final say

In the past, healthcare was often viewed as a static system, with doctors and healthcare providers holding ultimate authority. Lately, we hear more about patient engagement and how critical it is when deciding what works for people living with health challenges and evaluating what doesn’t work.

It’s important to note that the rise of health advocacy has effectively challenged the traditional hierarchy of healthcare workers were the first say and final say. People are no longer passive recipients of care but active contributors to their own well-being. Empowered by knowledge, technology, and an unyielding determination for change, health advocates have reshaped the conversation surrounding healthcare.

Storytelling on social media platforms

One significant shift in health advocacy has been the widespread embrace of digital platforms. The advent of social media, blogs, and online support communities has provided a global stage for individuals to share their experiences, knowledge, and frustrations.

Personally, I started sharing my family's health experience around 2010. I was skeptical and feared oversharing. Initially, I mainly shared on my blog to keep my friends and family informed about my daughters health and our family life. Then influencer culture took root, and I realized that storytelling and sharing had completely expanded well beyond people I actually knew.

It also opened the door to being called upon to speak on stages well beyond my dreams, like being sent on my first press trip to St. Jude Children’s Research Hospital.

The rise of the digital patient leader

Social Health Network was the first entity I heard that called digital health advocates patient leaders. The term was fully embraced and had a much better ring to it than digital health influencer which sounds pretentious, in my opinion.

In addition, it became clear that social media platforms have facilitated the growth of diverse virtual communities that rally behind various health issues, from mental health awareness to rare diseases. As a caregiver, I was able to find a network of people with the same diagnosis as my daughter and learn from them. I also was able to meet the first person in the world cured from sickle cell disease, Kimberlin Wilson-George, at a St. Jude event.

It was that experience that inspired me the most and help cultivate my feelings of hope and courage to speak up and advocate for others. Online spaces have become havens for connecting, educating, and advocating for change.

Digital responsibility

Moreover, the exponential growth of smartphones and health-centric applications has revolutionized how individuals integrate wellness into their daily lives. Tracking steps, monitoring heart rate, and managing caloric intake are just a few examples of how technology has enabled everyone to become an active participant in their own health journey.

Health advocacy has empowered individuals to take charge of their well-being through mobile applications that serve as personal assistants on the path to better health. At the same time, it gives us a level of responsibility that we have to take into consideration when listen to current events or see social media posts related to health. We have to make conscience decisions about when to speak up and when not to.

Public consciousness

The last decade has witnessed an increased public consciousness surrounding the importance of mental health. Health advocacy has played a pivotal role in dismantling the stigma associated with mental illnesses, creating a space for open dialogue and support. Advocates have tirelessly campaigned for improved mental health services, pushed for equality in access to mental healthcare, and promoted self-care practices. This paradigm shift has led to significant advancements in destigmatization and acceptance, making mental health an integral part of the overall health conversation.

Health is not a one-size-fits-all concept

Additionally, the focus on intersectionality and inclusivity within health advocacy has become more pronounced. Recognizing that health is not a one-size-fits-all concept, people from marginalized communities have come together to address the disparities in healthcare, and that the patient and caregiver voices should not be overlooked is a new priority. Health advocates have amplified the voices of those who have long been ignored by the system, advocating for equitable access, culturally sensitive care, and comprehensive health policies.

Progress is being made

Despite this remarkable progress in health advocacy, many challenges still lie ahead. The ever-changing landscape of healthcare demands, ongoing adaptability, and resilience. Overcoming disparities in access to care, battling misinformation, and ensuring equal representation remain critical tasks that the health advocacy community must address.

Hope for the future of health advocacy

As we embark on the next decade of health advocacy, it is essential to stay educated, united, open to innovation, and prioritize the needs of different types individuals with numerous health conditions. The power to shape the future of healthcare lies in our collective hands. I believe that it’s possible for us to create a world where every voice is heard, every need is met, and every person's health matters.

What are your thoughts on the evolution of health advocacy over the past decade? How do you envision its future? Share your perspective in the comments below!