Activities Report / InformationREPORT & INFORMATION
2024.12.02
Useful information
- #Patient Advocacy Groups
- #Patient Community
Patient Advocacy Groups: A Place for Mutual Support and Information Sharing
When diagnosed with an illness, many people experience anxiety and loneliness. During such times, “Patient Advocacy Groups (PAGs),” where you can connect with others who have similar experiences, can provide significant support.This article provides basic information for those who are hearing about PAGs for the first time.
1. What Are Patient Advocacy Groups?
PAGs are organizations where people who share similar patient experiences—such as the same illness, disability, or symptoms—and their families gather to support each other and share information. While the motivations for forming these groups vary, most are led by patients and their families, aiming to improve understanding of diseases, raise social awareness, and enhance medical care and welfare.
2. Main Roles and Activities of Patient Advocacy Groups
According to the Japan Patients Association, PAGs have three roles: “Understanding one’s illness correctly (grasping the illness scientifically),” “Patients and families encouraging and helping each other (not to be defeated by illness),” and “Aiming for a society where one can live with hope despite illness (creating a true welfare society).” To fulfill these roles, PAGs support patients and their families through various activities.
Specific examples of activities include:
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Information Sharing
- Sharing the latest information about treatments and research findings
- Organizing lectures and seminars with experts and healthcare professionals
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Psychological Support
- Interaction with people who have similar experiences
- Sharing and discussing concerns and anxieties
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Advocacy
- Activities aimed at improving medical and social security systems
- Initiatives to convey patients’ voices to society and raise disease awareness
3. Types of Patient Advocacy Groups
PAGs come in various forms, from those focused on specific diseases to comprehensive groups covering multiple conditions. They also range in scale from groups targeting patients and families in specific regions to internationally active organizations.
The main types of PAG include:
- Type
- Feature
- Disease-specific Patient Groups
- Focus on specific diseases or symptoms, enabling specialized information exchange. There is a diverse range of groups, from national to regional.
- Regional Patient Groups
- Operate in specific areas, focusing on face-to-face interaction. There is an extensive exchange of information on local medical resources.
- Online Patient Groups
- Include disease-specific groups on Social Networking Services (SNS) and patient-oriented SNS communities. Characterized by no geographical constraints due to internet-based interaction.
- Hospital-sponsored Patient Groups
- Centered around hospital patients, with relatively easy access to medical staff support.
- Family and Bereaved Family Groups
- Centered around patients’ families or bereaved families, they may offer opportunities to share caregiving experiences and find solutions to common concerns.
- International Patient Associations
- Enable network formation across borders through activities spanning multiple countries. Allow collaboration with patients overseas.
4. How to find Patient Advocacy Groups
PAGs have different characteristics in terms of their establishment motivation, target diseases, and focus demographics. Here are some methods to help you find a group that matches your situation and needs:
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Internet Search
[Search Tips]
- Example: Search using the keyword Mucopolysaccharidosis + “patient advocacy group,” “patient association,” “support group,” “Patient group,” etc.
- Adding your region name can help find nearby groups
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Consult Medical Institutions
Consulting with your doctor, nurse, or medical social worker can provide reliable information and potential referrals to suitable groups.
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Use Public Institution Websites
Public organizations such as local governments may compile information on PAGs on their Web sites. For example, Chiba Prefecture’s cancer information site “千葉県がん情報 ちばがんなび” introduces major cancer patient groups active in the prefecture.
In addition, non-profit organizations such as foundations also provide lists of PAGs. For instance, the Intractable Disease Information Center’s website allows you to view lists of member organizations of the Japan Patients Association.Go to external site
Please note that the linked websites are not operated by MEDIPAL Group.
To the external sitesGo to external site
Please note that the linked websites are not operated by MEDIPAL Group.
To the external sites -
Use SNS and Patient Community Sites
The rise of social media has led to an increase in online patient communities. Besides groups active on existing SNS platforms, sites specifically for patient interaction have emerged.
While these sites allow individuals to connect easily, careful attention to personal information handling is necessary.
5. Important Considerations When Joining Patient Advocacy Groups
Some PAGs may occasionally strongly recommend certain treatments without a scientific basis. When considering joining a group, it’s important to thoroughly check their activities by requesting materials and reviewing their websites and SNS presence. Also, be careful with personal information handling and make decisions after considering various opinions rather than worrying alone.
Points to Check Before Joining
- Purpose and activities of the patient group
- Conditions for participation
- Availability of membership fee
- Location and frequency of activities
- Communication method
6. Conclusion
PAGs serve as an important support foundation for patients and their families facing illness. In recent years, they have evolved beyond mere information exchange platforms to become entities contributing to medical quality improvement and social awareness by collaborating with national and local governments and participating in the research and development of new treatments. We hope that those considering joining PAG can select a community that best fits their needs.
Reference materials
- Three Roles of Patient Groups, Japan Patient Groups Web Version, (https://pg-japan.jp/three-roles/) (Accessed Oct 30, 2024)
- Rare Disease Communication Information Site “NanCommu,” (https://nancommu.net/) (Accessed Oct 30, 2024)
- Tips for Treatment Life: Using Places for Mutual Support Among Patients, National Cancer Center Cancer Information Service, (https://ganjoho.jp/public/support/hint/hikkei_02-01-08.html) (Accessed Oct 30, 2024)
- Expectations for Pharmaceutical Companies from Patients’ Perspective, JPMA Symposium, Oct 4, 2021, (https://www.jpma.or.jp/information/evaluation/symposium/lofurc000000tjj9-att/20211021_06.pdf) (Accessed Oct 30, 2024)
- Types of patient organisations, The European Patients’ Forum (EPF), (https://www.eu-patient.eu/members/what-is-a-patient-organisation/types-of-patient-organisations/) (Accessed Oct 30, 2024)
- Rare disease patient advocacy groups, National Genomics Education Programme, (https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/rare-disease-patient-advocacy-groups/) (Accessed Oct 30, 2024)
- Research Group Report for Realizing “Patient-Centered Medical Care” Supporting Patients’ Wishes, Cabinet Office, (https://www8.cao.go.jp/kisei-kaikaku/kisei/meeting/wg/2201_03medical/220831/medical08_0101.pdf) (Accessed Oct 30, 2024)