Endometriosis Advocacy

6/30/2021

Endometriosis Advocacy

International Classification of Endometriosis expands into New Stage, Pain Scales, Imaging and Surgical Diagnosis.

WHO - ICD Clinical classification consist of groupings of concepts (codes), plus definitions and business rules for their use. The standards are used by clinical coders to classify information derived from patient records, at the end of each hospital-provider consultant episode of care. Once the information is coded, it is then used in an aggregated, non-identifiable form, to allow for statistical and epidemiological analysis, reimbursement of hospitals and planning of health and care services - NHS Digital. The new WHO ICD11 Diagnosis codes will be the first version to include chronic pain. The chronic pain classification was developed by the Task Force of the International Association for the Study of Pain (IASP) and is based on the current scientific evidence and the biopsychosocial model. Chronic pain is defined as pain that lasts or recurs for more than three months. monstrates the demand for international comparisons of interventions across countries. The new WHO - ICHI covers all parts of the health system and contains a wide range of new material not found in national classifications. It describes health interventions using the three axes of Target, Action and Means. Users may choose to record as needed additional information about an intervention using a variety of extension codes.

5/13/2021

MRI, Ultrasound and Working an AI features to Excellerate Endometriosis Diagnosis

4/17/2021

March Endometriosis Awareness Month - ENDORights campaign

3/6/2021

Endometriosis Classifications

As a data scientist, systemic designer and health advocate, for the last 4 years I’ve tried to explain to the medical field through proposals in the ICD11 software and meetings that the data values and algorithms are not correct to capture Global Health Data for 200 million with endometriosis. The entire section on Endometriosis needs to be updated by data design. I have asked a medical field team to unite a network with a multidisciplinary team to update the classification for ICD11.

12/2/2019

EndoStats joined the NCD Alliance ENOUGH campaign to ignite action on NCDs and endometriosis.

EndoStats joined the NCD Alliance's ENOUGH campaign and the Global Week for Action on NCDs to promote the lived experience. Julie Prilling joined as a campaign consultant for the NCD Alliance.

5/7/2019

Working on updating the WHO: ICD-11 Codes for Endometriosis.

ICD-11 Codes define our global illnesses. These are important to understand global data and specialties involved. For the past 2 years, I spent over 200 hours collecting and submitting research, proposals and investigating the field of endometriosis to solve the inefficiencies of the descriptions. They are currently still in need of an update (and to have the correct medical credentials to defining them).

3/1/2019

The Stage System for Endometriosis is outdated. We've requested an update.

11/11/2018

Check out medical research on the new platform at Meta.org. It now has endometriosis as a select feed and it also covers thoracic and nerve involvement. #betatester

9/27/2018

Joined over 300 organisations and experts to call on world leaders

The absence of strong language on implementing the Best Buys, which focus on taxation, regulation and legislation, is a glaring omission from the document. This reflects interference and undue influence of health-harmful industries over a few countries who were prepared to shamelessly block progress for all. We are deeply disappointed that too few countries were prepared to stand up and show real leadership to put the health and wellbeing of their people ahead of the short-term and short-sighted economic interests of the few. Full article.

9/21/2018

Using endo voices and our stories to provide insight into NCDs and their impact for the United Nation's meeting.

9/20/2018

Grateful to be part of this amazing group and to have endometriosis represented in amplifying voices for people with NCDs at the United Nations High-Level Meeting.

6/28/2018

Women living with endometriosis unite to make their voices heard

Julie Prilling, the designer and data scientist who created the EndoStats platform, shares her insight with the NCD Alliance on the urgent need to raise awareness of the illness and generate meaningful action. Full article: NCD Alliance: ncdalliance.org/news-events/blog/women-living-with-endometriosis-unite-to-make-their-voices-heard

4/18/2018

Enough! No decisions about me, without me.

When you, and well as, family, friends and children you know can have a better system, work becomes a purpose.
I'm grateful to have a voice at the table representing endometriosis advocacy and the communities voice to bring change to our healthcare system. We have the opportunity to change the lives of millions of women and girls around the world. Thank you to the NCD Alliance for listening and letting those who are impacted join the conversation as we prepare for the upcoming UN meeting.

4/5/2018

Have you had ENOUGH? Let's join together and change policy by sharing our voices for the upcoming UN meeting on NCDs.

4/1/2018

Patient petition and protest to ACOG for better standards for endometriosis

We are at a time where patient advocacy is making waves to update the standard of care for endometriosis. One of the key issues in delayed diagnoses is a lack of knowledge among physicians, the petition claimed, citing an article on the ACOG: The American College of Obstetricians and Gynecologists website by its current president, Dr. Tom Gellhaus. In it, Gellhaus notes that 63 percent of general practitioners are not comforatable in diagnosing and treating endometriosis, and up to 50 percent are unfamiliar with the three main symptoms of the disease. “Educated patients, dedicated advocates, and expert endometriosis practitioners strongly believe that ACOG is not acting as a leader in endometriosis healthcare,” argues the petition, written by Casey Berna. “The lack of institutional leadership has caused suffering for patients in the form of delays in diagnosis and poor access to effectual care.”

3/1/2018

March is Endometriosis Awareness month and the world has lit up in support as many march around the world.

2/1/2018

Honored to advocate for endometriosis to be included in policy at for the 2018 UN NCD Meeting. The NCD Alliance invited 34 people living with NCDs from 22 countries to come together in Geneva for the Our Views, Our Voices campaign.

12/1/2017

WHO ICD-Code 11 update to clarify Endometriosis

Endometriosis advocacy and experts are contributing to defining correct classification for endometriosis for the World Health Organization ICD-11 Codes. This will advance understanding into illness awareness, doctor skillset and insurance clarity.

11/10/2017

WHO Health Literacy Community of Practice Group

The objective of the Health Literacy Community is to build expertise and improve the policy development process by gathering current and emerging information from all WHO regions and organizing it in one place. It provide a forum for community members to interact on the basis of those materials from time to time as the need arises.

10/31/2017

Our Views, Our Voices campaign bringing endometriosis to NCD Policy

Endometriosis is a NCD - a noncommunicable disease that effects over 176 million women. People with illness are being part of the conversation over policy and action that influences their lives. I was fortunate to represent women with endometriosis with my story and health information in Geneva to define the agenda for updates to policy for the 2018 United Nations - High Level meeting. It was amazing working with this amazing bunch.
Workshop in Geneva: https://ncdalliance.org/news-events/news/together-we-are-stronger
NCD Alliance: ncdalliance.org/news-events/news/advocacy-agenda-of-people-living-with-ncds-takes-centre-stage
Data: public.tableau.com/profile/william.guicheney#!/vizhome/OurViewsOurVoicesOnlineConsultationResultsDraft2/Dashboard2

9/1/2017

WHO's NCDs and me campaign shares stories of endometriosis

Personal stories reflect the need to have endometriosis join the conversation on NCD policy and action with the World Health Organization. SHARE YOUR STORY: apps.who.int/ncds-and-me/

7/18/2017

Endometriosis and VR surgical simulation education

Now that we understand that endometriosis can be found on every system of the body, there is an educational need to train Doctors to remove endometriosis from multiple organs. Laparoscopy and VATs virtual reality training could help women heal correctly and not have to have multiple surgeries due to skill. We are looking into ways to generate VR specific for endometriosis.

5/13/2017

The microbiome and illness

The medical field is diving head on into the connection between your microbiome (Immune System) and chronic illness. Innovation is acceleration change. From gathering data and research to the understanding of diet and environmental factors that effect illness are being studied.

5/7/2017

Extra-pelvic symptoms and awareness scale at the WEC 2017

Endometriosis Info

Designed patient-centered information to educate Doctors on the the true depth at the World Congress for Endometriosis .

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