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Global Public Health
When Patients Take the Lead: How Grassroots Advocacy Is Changing Healthcare in Asia
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Patient advocates assembled in front of the Korean National Assembly to call for a new law to protect patients

One of the most inspiring things about working in the healthcare industry is the potential for truly improving the lives of patients.

After my brother was diagnosed with schizophrenia, I directly experienced how a disease can disrupt, distress and derail an entire family—and also experienced the joy and relief that came with watching him reclaim his life after receiving the right medicine.

Now my family is enduring the emotional toll of Alzheimer’s disease as it continues to grip my father. While we were first encouraged by his initial response to one of the latest treatments, he’s struggling again. But our despair is mixed with the hope that scientific innovation will rescue him.

So it was with a particularly personal interest that I had the privilege of delivering a “Putting Patients First” keynote address at the annual FT Asia Healthcare & Life Sciences Summit in Singapore yesterday.

The summit brought together industry professionals and thought leaders to discuss the future of the healthcare sector in the Asia Pacific region, and I spoke about trends in patient empowerment that are poised to make a real difference in the way medical treatment is viewed and delivered moving forward.


The Power of Patient Empowerment

In his best-selling book, The Patient Will See You Now, Dr. Eric Topol launched the concept of the “democratization of medicine,” predicting that the doctor-knows-best approach in medicine will eventually be replaced by a future where patients will first generate and analyze their own health data and then engage the guidance of doctors after they have diagnosed themselves.

Some governments and leaders in the medical community agree that empowering patients to take more responsibility for their own care can help alleviate pressure on healthcare systems.
We can trace the roots of patient empowerment to the historical AIDS activist movement in the U.S. in the 1980s, when patients became self-educated experts who challenged and ultimately partnered with doctors, scientists, the FDA and pharmaceutical companies in the pursuit of saving lives.

This patient-led movement pushed an innovation agenda that led to medical breakthroughs that transformed HIV from a death sentence to a manageable long-term chronic condition for people around the world. It was the first time any type of patient group had influenced major changes in clinical research protocols, the regulatory process and even social policies.

It also inspired patient advocates in Europe and other parts of the world to empower and organize themselves in a similar way—and ultimately become a successful advocacy model for many other conditions, including breast cancer, diabetes, hepatitis and mental illnesses.


Putting the Model Into Practice in Korea

In Asia, instances of patient empowerment are sprouting up across the region, including Korea, where patient advocacy at the grassroots level has led to actual policy changes.

A few years ago, the Korean Alliance of Patient Organizations (KAPO) launched a high-profile initiative called the Shouting Café, where anyone is invited to share their experiences about injustice in the medical system at venues around Seoul, providing a necessary outlet and source of empowerment to those who previously felt helpless.

One such Shouting Café gathering garnered national media attention, and ultimately led to a new Patient Safety Act law that was passed by the national assembly last year. This law, which will become effective in July, will help reduce the risk of hospital-related errors in all medical institutions throughout Korea.

The government has even invited the president of KAPO to become an official member of Korea’s National Health Insurance Policy Deliberation Committee—the first time a patient has joined this government committee in Korea.

And just last week in Korea, a coalition of patient advocates partnered with professional organizations to launch the Korea Cancer Care Alliance (KCCA) to challenge the government to improve its current standard of care for cancer treatment.

Effective patient advocates such as these challenge and empower all of us to think differently and push harder to innovate on their behalf. They remind us that patients are depending on us, including those in our own families. We must remain open to their messages and embrace their partnership as we aspire toward a healthier society.

Kris Sterkens is Company Group Chairman of Janssen Asia Pacific. Under his leadership, operating companies across the region have launched a range of programs to improve the lives of patients by applying innovative technology solutions to address unmet medical needs, creating funding schemes that improve affordability, and forming public-private partnerships to support people living with chronic diseases and the healthcare professionals who care for them.

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