Low-Resource Countries Are we willing to meet the challenge?

Transcription

1 Low-Resource Countries Are we willing to meet the challenge? DEBRA International Congress DEBRA International Congress Zagreb 23 September 2016 Dr. Anja Diem, EB House Austria EB Ambulanz, EB-Haus Austria

2 What are we talking about? Low resource Low and middle median income Fragmentary public health care system Limited access to health care Long distances to find medical aid Food shortage -> undernutrition (malnutrition) Many people in rural areas without access to health care (professionals) Also in so-called rich countries! A problem we know for ages

3 What are we talking about?

4 What do we want to achieve? Goal 1: To improve quality of life of each individual living with EB quality of life - very individual ideas about what this means exactly! Goal 2: To enable clinical best practice care for each individual living with EB

5 What do we already have in 2016? Huge amount of information about EB guidelines handbooks brochures websites facebook groups videos Guides to general basics of wound care (e.g. from Global Help ) not everything is applicable to EB, but some good ideas anyway

6 Internet

7 DEBRA (and other support groups) 52 national DEBRA groups Committed people Good information material on websites and booklets

8 EB-Clinet Easy to find a first contact EB experts EB support groups about meetings and trainings

9 EB Literature. and many books with stories about individual patients (biographies, novels,..)

10 Best Clinical Practice Guidelines Projected: Nutrition, Laboratory,.

11 So what s the problem?

12 Who is already helping? EBWB core initiative of DEBRA International connects patients and families and doctors, nurses and other health care professionals (in close cooperation with EB-CLINET) provides basic information about EB helps building national DEBRA groups individual help DEBRA (international and national groups) EB-CLINET Committed health care professionals Rare disease organisations Local initiatives Private sponsors.

13 What do we wish? A magic wand to get rid of EB research is the only magic wand we have research needs a huge amount of funding, clinical trials and time to succeed one day Access to the best possible care and dressing materials for everyone national DEBRA groups are working very hard on this topic closely connected to national health systems, personal income, availabiliy, distribution systems,.

14 Biggest challenge? WHO: The challenges of wound healing in the developing world are connected to the reasons for the failure of health care delivery, which are linked, in turn, to poverty and social unrest To bridge the gap between rich and poor A.Diem

15 Problems? We can t provide what we do not have High expectations but there is still no cure (despite all efforts of research around the world) Increasing stress because of inadequate increasing demand for assistance Few people with dedicated time Low resources also in high resource countries (i.e. time, money, IT, ) Few EB specialists ~ 30 types of EB Legal restrictions (e.g. sending material, data protection, medical advice ) Language Logistic challenges Widely varying ideas about how help should be provided

16 What CAN we provide? about: EB wound dressing how to avoid and treat infection/inflammation nutrition different types of EB physical training strategies to handle pain and itch dental care. Access to medical advice/people with knowledge about EB

17 Basic Easy to understand Easy to perform Already some good examples (e.g. summary from Anna Kemble-Welsh, DEBRA Chile, London Guideline chapter ) Cheap (print, cards, app, ) Respect cultural issues Needed in many languages and/or non-language based

18 Picture-based? source: icoon global picture dictionary

19 Graphic-art-based? source: DEBRA Ireland/YouTube

20 ICOON-based? source: icoon global picture dictionary

21 Access to medical advice? Training of local health care professionals Workshops, web-based training, literature Telemedicine/Telecoaching Health care professional <-> Health care professional Health care professional <-> Patient Health care professional <-> Representative of DEBRA <-> Patient

22 Who should travel? Patient -> EB specialist? EB specialist-> Patient? EB specialist-> Local health care providers? Local health care providers -> EB specialists? DEBRA representatives -> Patient? Most efficient in 2016: information!!!

23 What do we need? Dedicated money and time Health care professionals with experience in EB who are able to dedicate at least a part of their time and knowledge to produce information material and to do coaching Creative workers/graphic artists/designers/ IT-Equipment Translators Knowledge about circumstances and cultures that are not ours and local health care systems

24 Who might be able/willing to help? Local wound care centers Local primary health care centers Global Help (produces low-cost publications for developing countries) WHO ( wound healing in the developing world ) Wound associations Médecins Sans Frontières All these activities should be coordinated (at least reported to and listed..) by EBWB

25 What can WE (= each of us) do? Build a network around EBWB Collect information/material Make contact to partners with similar interests (rare disease,..) Make contact to locals who might be willing to get involved, or who are interested in education (health care providers, woundmanagers, ) Provide your knowledge about health care systems in other countries and about traditional medicine and local approaches to wound care (also for unconventional approaches!) Provide contact to tanslators, creatives, companies, donors, politicians

26 What is the next step in your country? & Specialised EB centers & Research groups Access to best clinical practice, paid by national health system Cure (or at least life free of pain and symptoms) Access to best clinical practice, paid by national health system & EB experts and nat. DEBRA Access to advanced wound care (material) and EB specialists Access to advanced wound care (materials) and EB specialists Access to advanced wound care (materials) and EB specialists & Local health care providers and support groups Low-threshold provision of basic medical care Low-threshold provision of basic medical care Low-threshold provision of basic medical care Low-threshold provision of basic medical care EBWB/ DEBRA Int. Basic information and wound care Basic information and wound care Basic information and wound care Basic information and wound care Basic information and wound care

27 What can WE (= each of us) do? Share your ideas (also/particularly the unconventional and crazy ones!) Send your ideas to: EBWB, DEBRA International, EB-Clinet, Crazy Corner at the congress!

28 at least in the EB-world!

29 Thank you! A.Diem Dr. Anja Diem EB House Austria Outpatient Unit University Hospital of Dermatology Salzburger Landeskliniken (SALK) Paracelsus Medical University Salzburg (PMU) Muellner Hauptstrasse Salzburg Austria T +43 (0) F +43 (0) a.diem@salk.at