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Advocacy in Public Hospitals The Cancer Conclave 2024

Revolutionizing Cancer Care: Advocacy in Public Hospitals – The Cancer Conclave 2024

Breaking Barriers: The Cancer Conclave 2024 – Pioneering Advocacy for Revolutionary Cancer Care in Public Hospitals

I would like to introduce Dr. Akhil Kapoor, an officer in charge – MPMMCC in Varanasi. He is gonna take us through the role of advocacy groups in Public funded hospitals and setups. 

Today, we have expert panels from various past of countries, including Dr. Alok Goel – Medical Oncologist, TMH Sangrur, Dr. Amit Agarwal – Medical Oncologist, AIIMS Raipur, Dr. Venkata Pradeep –  Medical Oncologist, Assam Cancer Care Foundation, Dr. Atul Batra-  Associate Professor in Medical Oncology at AIIMS, New Delhi, Dr. Kushal Gupta – Special Registrar at Tata Memorial Hospital, Mumbai, Dr. Amol Akhade – Medical oncologist, Mumbai.

Do you believe in advocacy groups?

Patient advocacy groups play a crucial role in the healthcare system for several reasons –

  • Support and Education – These groups provide valuable support and education to patients and their families. They often offer resources, information, and guidance on various medical conditions, treatments, and navigating the healthcare system.
  • Empowerment: Patient advocacy groups empower individuals to become active participants in their own healthcare journey.
  • Voice for Patients: Advocacy groups serve as a collective voice for patients, representing their interests and concerns to healthcare providers, policymakers, and other stakeholders.
  • Research and Awareness: Many patient advocacy groups fund research initiatives, raise awareness about specific health issues and promote early detection and prevention strategies.
  • Policy Influence: These groups often engage in advocacy efforts aimed at influencing healthcare policies and regulations at the local, national, and international levels.
  • Community and Networking: Patient advocacy groups create a sense of community among individuals facing similar health challenges.
  • Reducing Stigma: For many health conditions, patient advocacy groups play a crucial role in reducing stigma and discrimination.

Overall, patient advocacy groups play a multifaceted role in improving the lives of individuals affected by various health conditions, from providing support and education to driving policy change and advancing research efforts.

Role of advocacy groups

They can play several important roles within hospitals including –

  • Patient Support: Advocacy groups can provide direct support to patients within the hospital setting about the patient’s rights, offering emotional support to patients and families facing difficult medical decisions.
  • Education and Awareness: These groups can offer educational programs and materials within hospitals to raise awareness about specific health conditions, treatment options, and preventive measures.
  • Policy and Procedure Advocacy: Advocacy groups can advocate for changes in hospital policies and procedures to better meet the needs of patients. This may include advocating for improved access to care, and better communication between patients and healthcare providers.
  • Quality Improvement: Advocacy groups can collaborate with hospitals to identify areas for improvement in patient care and safety.
  • Community Engagement: Hospitals often serve as hubs of community health, and advocacy groups can partner with hospitals to engage with the local community. This may involve hosting health fairs, educational events, and support groups within the hospital to promote health and wellness.

New setups coming up rapidly throughout the country. How to convince people to get treatment at local places instead of rushing to metro cities?

Convincing cancer patients to seek treatment locally rather than rushing to metro cities can be challenging, but here are some approaches that may help –
  • Emphasize Quality of Care: Highlight the quality of care available locally. Explain that many smaller hospitals and clinics now offer state-of-the-art cancer treatment facilities and expertise that rival those in metro cities.
  • Personalized Approach: Take a personalized approach to each patient. Understand their concerns and fears about receiving treatment locally and address them individually. Listen to their preferences and concerns and provide reassurance based on their specific situation.
  • Highlight Convenience and Comfort: Emphasize the convenience and comfort of receiving treatment locally. Point out that staying close to home can reduce the stress and financial burden associated with traveling to a metro city for treatment.
  • Cost Considerations: Discuss the cost considerations of seeking treatment locally versus in a metro city. Explain that local treatment options may be more affordable due to lower travel and accommodation expenses. Provide information about insurance coverage and financial assistance programs available for local treatment.
  • Access to Support Services: Highlight the availability of support services and resources for cancer patients locally. Explain that many local hospitals and clinics offer comprehensive support services, including counseling, support groups, and assistance with navigating the healthcare system.
  • Success Stories and Testimonials: Share success stories and testimonials from other cancer patients who chose to receive treatment locally. Hearing about positive experiences from individuals who have been through a similar situation can help alleviate concerns and build confidence in local treatment options.
  • Consultation with Local Specialists: Encourage patients to schedule consultations with local oncologists and specialists to discuss their treatment options in detail. Provide information about the qualifications and experience of local healthcare providers to help patients feel more comfortable with their decision to receive treatment locally.
  • Provide Information and Resources: Offer educational materials, websites, and other resources that provide information about cancer treatment options available locally. Empower patients to research and make informed decisions about their treatment journey.

Ultimately, the decision of where to receive cancer treatment is deeply personal and should be made based on the individual patient’s preferences, medical needs, and circumstances. By providing information, support, and reassurance, healthcare providers can help patients feel confident in their decision to receive treatment locally.

Barriers to Comprehensive Care at Tier II/III Cities

Tier II and III cities often face several barriers to providing comprehensive care, including –

  • Lack of specialized healthcare providers and facilities.
  • Infrastructure and equipment constraints.
  • Limited access to clinical trials.
  • Shortages of healthcare workforce.
  • Financial constraints for patients.
  • Limited awareness and education about cancer.
  • Transportation and accessibility challenges.
  • Stigma and cultural beliefs.

Besides that, we have different government plans like Ayushman Bharat and Mukhyamantri Swasthya Yojna that can give patients up to 20-25 lakhs if they need money for treatment. But many people don’t know about these plans because they worry about money and how far they have to go. Also, not all patients can use these services because they don’t have the right government card. To fix these problems, we need to do many things like making hospitals better, training more doctors and nurses, teaching patients about their options, and giving financial help. Everyone – the government, doctors, charities, and businesses – needs to work together to make sure people in smaller cities can get good cancer care.

Gaps from the Patient’s side for proper follow-up. Can advocacy help?

Yes, patient advocacy can play a significant role in addressing gaps from the cancer patient’s side for proper follow-up. Some ways in which patient advocacy can help include –
  • Education and Empowerment: Patient advocacy groups can educate cancer patients about the importance of follow-up care and empower them to take an active role in managing their health.
  • Support and Guidance: Patient advocates can offer support and guidance to cancer patients as they navigate the healthcare system and follow-up care. This may include helping patients schedule appointments, understand medical instructions, and overcome barriers to accessing follow-up services.
  • Addressing Barriers to Follow-Up Care: Patient advocates can identify and address barriers that prevent cancer patients from attending follow-up appointments, such as transportation issues, financial concerns, or fear and anxiety about recurrence.
  • Advocating for Patient-Centered Care: Patient advocacy groups can advocate for healthcare policies and practices that prioritize patient-centered follow-up care. This may involve advocating for improved communication between patients and healthcare providers, better coordination of care, and access to survivorship care plans that outline follow-up recommendations.
  • Promoting Awareness and Adherence: Patient advocates can promote awareness among cancer patients about the importance of adhering to follow-up care recommendations and encourage them to prioritize their health and well-being.
  • Feedback and Quality Improvement: Patient advocacy groups can provide feedback to healthcare providers and institutions about the patient experience with follow-up care. 

Overall, patient advocacy can be instrumental in helping cancer patients overcome barriers to proper follow-up care and ensuring they receive the ongoing support and monitoring they need to optimize their health outcomes.

So far, about 7% of people reaching 75 years old in India are getting cancer. This could go up to 10% in the next 20 years, meaning a lot more cancer patients in the coming decades. To get ready, we need to set up groups to support patients for life and close the gap in care. That should be our focus this year, along with making sure there are new centers and better facilities for everyone. India is becoming a place for clinical trials on cancer. I always say it’s important for patients to take part in these clinical trials, as recommended by NCCN guidelines. This should be a guideline in all advocacy group meetings. Just to give an idea, we have 7 clinical trials for lung cancer treatment underway. This means we can offer good treatment that’s not too expensive. Even if patients don’t get reimbursed, they often get the treatment for free, which is now a standard of care. I hope more centers start doing this, and through advocacy groups, we can help cancer patients have better outcomes.

I hope I was able to do justice today. Thank you so much…

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