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PARSGO Patient Advocacy for the Region

Presenter: Dr. Xezal Derin

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PARSGO Core Team

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Location of our Members

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Education

Research

Tumorboard

Patient Advocacy

Our work focuses on four key areas:

Education—to raise awareness and spread knowledge.
Research—to generate evidence and improve care standards.
Tumor Board discussions—ensuring multidisciplinary approaches.
Patient Advocacy—empowering women through education and representation.

Together, these areas ensure that patient-centric care remains at the heart of everything we do.“

"These four task forces don’t work in isolation. They collaborate to address the needs of patients at every stage. For example, the Patient Advocacy team ensures that the voices of women are represented in Tumor Boards, and the Education team amplifies that message through workshops and campaigns.

This collaboration ensures that every woman, regardless of her circumstances, has access to equitable, compassionate care.

Let me highlight one of these areas in more detail: Education and Patient Advocacy."

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Education and Patient Advocacy:

Social media campaigns for raising awareness:

Topics include early detection, treatment options, and breaking stigmas.

Workshops:

Patient Advocacy Online Webinar 2023 with Prof Nermean

and Joelle Aboukhalil;

3rd International Arab Women Days Patient Advocacy Session

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Education and advocacy are powerful tools to break stigmas, spread awareness, and empower patients. One of our key strategies is leveraging social media to amplify our message.

We’ve also conducted workshops like the PA Workshop 2023 led by experts like Prof. Nermean Mostafa and Joelle Aboukhalil. These workshops create a safe space for discussion and education, empowering women to take charge of their health."

Interview was 1806 people watched it

"Another powerful example of advocacy in action is seen in our social media efforts to raise awareness. On World Oncology Day, we partnered with Engage to highlight the importance of breaking stigmas surrounding cancer. Through interviews and campaigns, we spotlighted stories of resilience and created a platform for open conversation. These efforts help normalize discussions about gynecological health, which is essential for reducing stigma.

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Example of Social Media Awareness Campaigns

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Social Media Campaigns in Patient Advocacy

Social media builds communities and spreads health information
World Gynecologic Oncology Day 2020: (initiated by European Society of Gynaecological Oncology and the European Network of Gynaec)

382 accounts, 662 tweets/retweets, 22% healthcare professionals.
Effective hashtags: #WorldGODay, #GoForPurple, #GoForCheckup.

Success factors: short, memorable hashtags and coordination with influencers.
Impact: Raised awareness of gynecologic cancers globally.

Citation:�Uwins C, Yilmaz Y, Bilir E, Bhandoria GP. World Gynecologic Oncology Day: the use of Twitter to raise awareness of gynecologic cancers.

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Example of Social Media Awareness Campaigns

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Patient Advocacy in Tumorboards

Function: Representing patients' wishes and needs in clinical decisions.
Common Advocacy-Driven Needs in Tumor Boards:

Fertility-sparing treatment options
Financial considerations of treatment plans
Addressing time toxicity and balancing care with patient life circumstances
Palliative Care and Quality of Life
Inclusion in clinical trials or access to innovative treatments

Why It Matters: Advocacy ensures that medical jargon is simplified and that patients fully understand their options, empowering them to make informed decisions; Advocacy addresses systemic disparities, ensuring that marginalized or rural populations have equal access to care

Slide 6: Patient Advocacy in Tumor Boards

Tumor Boards are meetings where multidisciplinary teams, including oncologists, surgeons, radiologists, and patient advocates, collaborate to create personalized treatment plans for patients. They ensure that all aspects of care—medical, emotional, and social—are considered in decision-making.

"Another innovative way PARSGO integrates advocacy is through its Tumor Boards. These boards bring together multidisciplinary teams to ensure that patient needs and wishes are prioritized in clinical decisions.

For example, Tumor Boards consider advocacy-driven needs such as:

Fertility-sparing treatment options.
Financial considerations of treatment.
Balancing treatment schedules with the patient’s personal life—what we call 'time toxicity.'
Palliative care and quality of life.
Ensuring access to clinical trials or innovative treatments.

This approach simplifies medical jargon for patients and ensures their voices are heard. By addressing disparities, PARSGO ensures equitable access to care for marginalized communities."

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Research and Patient Advocacy:

Role of Research: Understanding and addressing healthcare disparities.
Pilot study focus: Evaluating the visibility and accessibility of PAGs in MENA.

Methodology:

Systematic search of online platforms and social media (local languages)
Focus: PAGs registered for women’s cancers in MENA
Excluded: Non-cancer PAGs, individual advocates/influencers

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Key Findings

Identified PAGs: 10 across 9 countries, all accessible online
Activity:

50% active homepages (updated < 3 months)
100% active social media accounts (posts < 2 weeks)

Languages: 60% provided multilingual content
Funding:

100% relied on sponsorship/donations
70% received government support, none from membership

fees

Collaboration:

90% had clear mission statements
Only 50% collaborated with other regional groups

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Why This Gap Exists

Challenges in Patient Advocacy for the MENA region:

Breaking down cultural stigmas and barriers to women’s health
Limited regional collaboration among advocacy groups
Overcoming funding challenges and sustainability issues
Promoting equitable access to resources in diverse communities
Lack of Awareness about PA groups, also unequal access to it

Cultural Stigmas Around Women’s Health�In many parts of the MENA region, discussing women’s health, especially gynecological issues, remains taboo. This stigma discourages open conversations about symptoms, early detection, and treatment options. For instance, women may feel embarrassed or fearful of being judged if they seek medical attention for gynecological concerns, leading to delays in diagnosis and treatment. Moreover, societal norms may prioritize family or societal expectations over individual health, further discouraging advocacy for women’s health issues.

Limited Regional Collaboration Among Advocacy Groups�Patient Advocacy Groups (PAGs) in the region often work in isolation rather than forming strong networks. This lack of collaboration means that resources, expertise, and strategies are not shared across groups, limiting their collective impact. For example, a successful campaign in one country may not reach others simply because there’s no framework for collaboration or information-sharing. Without a unified front, these groups struggle to advocate effectively for broader, region-wide change.

Funding Challenges That Threaten the Sustainability of These Groups�Advocacy groups frequently rely on sponsorships, donations, or limited government support, which can be unpredictable or insufficient. For instance, without consistent funding, groups may struggle to maintain campaigns, host events, or even pay for basic operational costs. This financial instability often leads to the closure of groups or limits their ability to expand their reach and impact.

Unequal Access to Resources, Particularly in Rural and Marginalized Communities�Women in rural or economically disadvantaged areas face significant barriers to accessing advocacy and healthcare resources. For example, these communities may lack access to reliable transportation, internet connectivity for virtual advocacy campaigns, or even basic healthcare facilities. As a result, the efforts of advocacy groups often fail to reach the women who need them most, deepening existing health disparities.

Lack of Awareness About PAGs and Unequal Opportunities to Participate in Them�Many women in the region are simply unaware that Patient Advocacy Groups exist or do not know how to engage with them. This lack of visibility can be due to insufficient outreach efforts or barriers like language and literacy. Additionally, opportunities to participate in advocacy campaigns or support groups may be limited to urban centers, excluding women from rural or underserved areas. This creates an uneven playing field where only certain groups of women benefit from advocacy initiatives.

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Conclusion and Next Steps

Limited online visibility and collaboration among PAGs in MENA
PARSGO’s role:

Build a unified platform for better accessibility and dialogue.
Foster regional and global collaboration to strengthen advocacy.

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