Learn the best practices for patient advocacy networks that focus on cancer patients. Find out how to connect, support, and advocate for yourself and others.

As a patient/survivor and caregiver, I want an advocacy organization that focuses on the person with cancer and their care team. Having diverse patient voices at the table will ensure best practices regardless of status, type/biomarker/stage or geographic location. Patients trust other patients. As a consultant and advocacy professional, I want as many patient perspectives as possible to ensure that our services and programs are serving all patients.

Most charities avoid working together , while I’ve always tried to bring testicular cancer communities together as a man who’s had it twice , I found that almost all the others are staffed by people who’ve ever had it. These people are mostly hired to raise the profile and get money in, the Chance that a person going through cancer might “ donate “ to you instead of them is a risk and the actual cause of support takes a second even third place behind getting funds in. Not all but most, almost all charities are business first , charities second

What are the best practices for patient advocacy networks that focus on cancer patients?

If you or someone you love has been diagnosed with cancer, you may feel overwhelmed, scared, and alone. But you don't have to face this challenge by yourself. There are many patient advocacy networks that can provide you with information, support, and guidance throughout your cancer journey. Patient advocacy networks are groups of people who share a common interest or experience with a specific type of cancer or a related issue. They can help you connect with other patients, caregivers, health professionals, researchers, and policy makers. They can also help you access resources, services, and opportunities that can improve your quality of life and outcomes. In this article, we will explore some of the best practices for patient advocacy networks that focus on cancer patients.

1 Define your mission and vision

The first step to creating or joining a patient advocacy network is to define your mission and vision. What is the purpose of your network? What are your goals and objectives? What are the values and principles that guide your actions? Your mission and vision should be clear, concise, and compelling. They should reflect the needs and preferences of your target audience and stakeholders. They should also be aligned with the current evidence and best practices in cancer care and research.

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Katie Brown

Author, Consultant, Public Speaker & 20 yr Patient Advocate. Cofounder of the Lung Cancer Support Community
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As a patient/survivor and caregiver, I want an advocacy organization that focuses on the person with cancer and their care team. Having diverse patient voices at the table will ensure best practices regardless of status, type/biomarker/stage or geographic location. Patients trust other patients. As a consultant and advocacy professional, I want as many patient perspectives as possible to ensure that our services and programs are serving all patients.

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Phil Morris MBE

British army veteran and regiment boxer- founder of TesticularcancerUK.com - Awarded MBE 2021 - keep getting cancer but I’m still here somehow, “ what will be will be, what’s done is done “
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Friendship and a safe place to seek advice , simple . Be available out of normal hours and never think it’s a 9 to 5 job, emotional journeys certainly aren’t

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2 Build your network and partnerships

The second step to developing a patient advocacy network is to build your network and partnerships. Who are the people and organizations that share your mission and vision? How can you reach out to them and engage them in your activities? How can you collaborate and coordinate with them to achieve your goals? Building your network and partnerships requires effective communication, trust, and mutual respect. It also requires identifying and leveraging your strengths, assets, and resources. You should seek to create a diverse and inclusive network that represents the voices and perspectives of different cancer patients and stakeholders.

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Phil Morris MBE

British army veteran and regiment boxer- founder of TesticularcancerUK.com - Awarded MBE 2021 - keep getting cancer but I’m still here somehow, “ what will be will be, what’s done is done “
Report contribution
Most charities avoid working together , while I’ve always tried to bring testicular cancer communities together as a man who’s had it twice , I found that almost all the others are staffed by people who’ve ever had it. These people are mostly hired to raise the profile and get money in, the Chance that a person going through cancer might “ donate “ to you instead of them is a risk and the actual cause of support takes a second even third place behind getting funds in. Not all but most, almost all charities are business first , charities second

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3 Plan and implement your activities

The third step to running a patient advocacy network is to plan and implement your activities. What are the specific actions that you will take to fulfill your mission and vision? How will you measure and evaluate your progress and impact? How will you adapt and improve your activities based on feedback and learning? Planning and implementing your activities requires strategic thinking, project management, and problem-solving skills. It also requires creativity, innovation, and flexibility. You should design and deliver your activities based on the needs and interests of your network members and partners. You should also seek to align your activities with the national and global cancer agenda and priorities.

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4 Provide and receive support

The fourth step to sustaining a patient advocacy network is to provide and receive support. How will you support your network members and partners in their cancer journey? How will you receive support from them and other sources? How will you cope with the emotional, physical, and practical challenges of cancer? Providing and receiving support requires empathy, compassion, and kindness. It also requires self-care, resilience, and balance. You should offer and accept support that is appropriate, respectful, and helpful. You should also seek to create a supportive and positive culture within your network.

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5 Advocate for change

The fifth step to advancing a patient advocacy network is to advocate for change. How will you raise awareness and influence decision-making about cancer issues? How will you empower and mobilize your network members and partners to take action? How will you collaborate and partner with other advocates and stakeholders to create change? Advocating for change requires passion, courage, and persistence. It also requires knowledge, skills, and tools. You should advocate for change that is based on the needs and preferences of cancer patients and stakeholders. You should also seek to advocate for change that is evidence-based, ethical, and sustainable.

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6 Celebrate and share your achievements

The sixth and final step to enhancing a patient advocacy network is to celebrate and share your achievements. How will you recognize and appreciate your network members and partners for their contributions and efforts? How will you celebrate and share your successes and learnings? How will you inspire and motivate others to join or support your network? Celebrating and sharing your achievements requires gratitude, humility, and joy. It also requires storytelling, dissemination, and promotion. You should celebrate and share your achievements in a way that is meaningful, authentic, and engaging. You should also seek to celebrate and share your achievements in a way that can increase your network's visibility, credibility, and impact.

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7 Here’s what else to consider

This is a space to share examples, stories, or insights that don’t fit into any of the previous sections. What else would you like to add?

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What are the best practices for patient advocacy networks that focus on cancer patients?

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1 Define your mission and vision

2 Build your network and partnerships

3 Plan and implement your activities

4 Provide and receive support

5 Advocate for change

6 Celebrate and share your achievements

7 Here’s what else to consider

Healthcare

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What are the best practices for patient advocacy networks that focus on cancer patients?

1

2

3

4

5

6

7

1 Define your mission and vision

2 Build your network and partnerships

3 Plan and implement your activities

4 Provide and receive support

5 Advocate for change

6 Celebrate and share your achievements

7 Here’s what else to consider

Healthcare

Rate this article

Thanks for your feedback

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