Grass-roots Health care ReformsCollaboration between Patient Support Groups and Medical Professionals

Miwako Hosoda 1, Mieko Shinohara 2, Yurie Yoshino 1,3

1. Seisa University, School of Education 2. Japan ME Association

3. Japan Sarcoma Center Project

ISA World CongressYokohama, Japan, July 13-19, 2014 RC15 , Friday 17th at 8:30-10:00pm

Mieko ShinoharaPresident of Japan ME Association

Problems around Healthcare Domain in Japan

・Continuance of the National Healthcare Insurancebecause of the rapid growth of the aging population.

・Shortage of healthcare providers.

・Illness-related stigma and discrimination.

・”Neglected Disease”

Sick RoleTraditional Sick Role by Talcott Parsons

Right 1) The sick person is exempt from normal social roles.

Right 2) The sick person is not responsible for their condition.

Obligation 1) The sick person should try to get well.

Obligation 2) The sick person should seek for a technically help and cooperate with the medical professionals.

Resent Discussion

・Individual may not accept a ‘passive patient’ role.

・There are variations depending on social class, gender and ethnicity.

・Sick role only applies to acute illnesses, and chronically ill patients are often encouraged to be independent”.

Health Social Movements(HSMs)

•Progress in the treatment of certain diseases

•Greater social understanding of the diseases

•More guarantees for patients’ rights

The examples of HSMs demonstrate how patients, victims and their supporters have created informal networks to protest and change decisions by medical professionals, researchers, and the government.

Health Social Movements (HSMs)

(Brown and Zavestoski 2004, 2005).

Research Question

・Examine how the patientsmovements are performed and what are the outcomes of their activities.

Method・Case Study of the activities of the patients support groups(Sarcoma, ME/CFS, and HansenDisease)

Japan Sarcoma Center Project(2009/02/09～)

Activities for Sarcoma Awareness

1. Visit the Ministry of Health, Welfare

and Labour

2. Publish the book on the

experience as a sarcoma

patient

3. Participating in

Cancer events

“Relay for Life Japan”(cancer walk)

Japan Sarcoma Center Project published the Leaflet, “What is Sarcoma”, for the patients and their family,which was distributed to 375 Cancer Hospitals.

First “Sarcoma Team“ in Japan was established in 2009at the National Cancer Center.

First “Sarcoma Center” in Japan was established in 2012 at the Cancer Research Center Hospital

PRESS RELEASE IN AUGUST 17TH IN 2012ENTRANCE OF THE CENTER

Japan ME Association（2010/02～、2012/06～）

Translations of the latest medical information on ME/CFS

・Clinical Case Definition and Guidelines for ME/CFS

・Lecture by Dr. Komaroff(Professor of Harvard Medical School) in 2010

・International Consensus Criteria for ME

Translate a documentary film andAdvice brochure for patients

Dr.Valling’s handbook

for ME/CFS patients;

treatment, self care

method on daily life,

encouragement.

Brochure of the British

ME Association on essential information on severe

ME/CFS patients, and Children

and Youth with ME/CFS.

Inviting ME/CFS Specialiststo Japan for symposium

Collaboration with the

Massachusetts CFIDS/ ME

and FM Association

Dr. Charles Lapp

Dr. Alan Gurwitt

Collaboration with Japanese Medical Professionals

WAON therapy （和温療法）by Dr. Keiko Amano (board member of ME

Association)

WAON therapy, developed in

Japan, is repeated thermal

therapy which uses a dry sauna.

This therapy is effective for the

patients with ME/CFS.

Media Coverage

Summary of the Activities of the Patients Groups•Toward medical professionals and general public⇒Make awareness.

•Toward the central government and medical researchers⇒Promote biomedical research on ME/CFS

• Name change to avoid discrimination

•Peer support among patients

•Exchange information and knowledge on the disease

•Consulting social and medical services

Health Governance (Ideal Type)Collaboration among actors concerning with Medical Healthcare

Healthcare Reform

Medical Professionals

Reconstruction of Professionalism

GovernmentListen to the voice of

patient and Medicalprofessionals

PatientsSpeak-out

“wise patient”

NPOVolunteer

Mass Media

PoliticiansListen to the voice of

patient and Medical

Professionals

If people keep working to make a difference , healthcare reform could be realized.

Thank you for your attention!Q and A