How do I set up an EDS ECHO?

The Ehlers-Danlos Society has launched EDS ECHO, a program that seeks to support health professionals around the world in caring for those with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We currently have two hubs, one in the USA and one in the UK. From our hubs, we run 90-minute virtual teleECHO clinics via the Zoom conferencing platform.

Our long-term goal is to expand across the world, creating multiple hubs in different regions in many languages and covering all time zones, removing the barriers for any clinician who wishes to join in and learn about the diagnosis and management of the EDS and HSD.

EDS ECHO can take different shapes and forms according to each group’s needs. We can offer the administrative and clinical expertise to support a program and act as the hub for this, managing the administrative processes, while local clinicians lead the program. Alternatively, we can work with a group to find them a lead and their own local administrative team, supporting them to become an EDS ECHO Hub.

ECHO Options

The frequency and number of sessions in a program is flexible and could run weekly, fortnightly, monthly, or quarterly based on a group’s needs.

Specialty programs are for healthcare professionals with particular expert needs wishing to run specialty meetings, for example surgical disciplines, the rarer types of EDS, Paediatrics, Therapies, Gastroenterology and other medical disciplines.
Cost per session: For those interested in setting up a Speciality EDS ECHO financial support could be provided as part of the existing EDS ECHO funding.

Geographic programs develop existing or establish new networks for clinicians in particular regions or countries, anywhere around the world. These are encouraged to be run in the country’s local language.
Cost per session: $437.50 per session plus an additional $250 per expert per session.

Organization programs are for healthcare organizations such as hospital groups or community clinics wishing to establish multidisciplinary teaching, clinical mentoring and support developing and enhancing their organization’ services.
Cost per session: $437.50 per session plus an additional $250 per expert per session.

Setting up your own EDS ECHO Hub — If you wish to become a full EDS ECHO Hub there is training involved that includes Immersion Training with one of Project ECHOs SuperHubs. We can advise you further on this. Each newly established EDS ECHO hub will work closely with the existing hubs to develop mutually agreed curricula.
Costs: Please contact us to get costs on setting up your own EDS ECHO Hub.

Types of Programs

We currently run two structured concurrent 9-week rolling programs that cover all areas of EDS and HSD — from making the diagnosis to managing the related conditions. The programs are a combination of teaching presentations and case-based discussions. This is one example model, but there are other ways that this could be managed.

Structured sessions cover specific subjects in a pre-planned program over a set period of time. The number of sessions in a structured program is the choice of the program lead(s). This program may be repeated and/or be the initial engagement for the network before establishing longer term regular open sessions.

Open sessions are regular multi-disciplinary team meetings allowing discussion across the breadth of care as issues arise for participants within the group.

Mixed — a combination of Structured and Open.

Cost Breakdown

Depending on the group’s needs for administrative and clinical support the fees per session in US Dollars are:

Administration $32.50 per hour of support required for the whole program, and per session
IT Support $110.00 per session
Hub Facilities $120.00 per hour
Senior Clinical Facilitator $175.00 per session inclusive of preparation (total 2 hours)
Expert Invited Guest $250.00 per guest. Invited guests have the right to donate their fee to The Ehlers-Danlos Society.

Optional recommended addition

Quality Outcome Research: We encourage all programs to engage in the assessment of the educational value, changes to practice, and outcomes for patients. Our researchers and data repository are based at PennState University, USA. We base time commitment per program at a senior Associate Professor level university cost of $675 per day / $85 per hour.

The core team required to manage ECHO sessions includes:

The Administrator — the principal responsibility is setting up sessions, liaising with the nominated lead for the programme, case presenters and the facilitator, supporting spoke individuals and groups with any queries, ensuring the ECHO sessions and participant details are recorded on the iECHO database, and can also support the organization in applying for CME / CPD.

The IT support — principal responsibility is to ensure that the Society’s hub facilitation site equipment is functioning during a session and advise participants on IT issues arising during a session. We can also assist an organization in its preparation for running a program in terms of equipment and software requirements.

The Facilitator — a senior clinician with broad knowledge of EDS will support the development and running of sessions with the clinical lead(s) for the organisation / network, ensure maintenance of clinical governance, equal opportunities for participants, and support of Administration or IT as required.

If you would like to know more about getting involved in EDS ECHO then please contact us here.