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Project "Help, Dement!"
1. Project ‘Help, Dement!
Patiënt en mantelzorger aan het woord’
Manna Alma, onderzoeker
Griet-Anne Banga, onderzoeker
Auke Wiegersma, p j
g , projectleider
2. DIPEx – de achtergrond
Websites:
www.healthtalkonline.org
g
www.youthhealthtalk.org
(www.praten-over-gezondheid.org/nl = Fonds ‘POG’)
PAW, UMCG GZW Sociale Geneeskunde
3. DOELSTELLINGEN DIPEx
About Us
The DIPEx charity has produced a unique, award winning
unique
website aimed at patients, their carers, family and friends,
doctors, nurses and other health professionals.
Our aim is to cover 100 important illnesses and conditions, as
well as covering areas such as immunisation, rare diseases,
skin conditions, infertility, chronic illness and many, many more.
Op dit moment inmiddels 60 modules
PAW, UMCG GZW Sociale Geneeskunde
4. PRIJZEN
Highly Commended - eTechnology
British Medical Association - 2005
Highly Commended - Patient Information award (websites).
British Medical Association - 2004
Commended:
C d d
Patient Information award (websites).
The Guardian
DIPEx was rated one of the 10 best online health resources in 2004BUPA
Foundation Awards 2004
Winner:
BUPA Foundation Communication Award 2004
Healthcare IT Effectiveness Awards 2002
Finalist:
Best P bli l Accessible H lth R l t d I f
B t Publicly A ibl Health Related Information S t
ti System
Social Innovations Awards 2001
Winner:
Medical category - Social Innovations Awards 2001
PAW, UMCG GZW Sociale Geneeskunde
5. ONDERWERPEN (2007)
Latest modules .. Women's Health, Pregnancy and Screening
Young people with epilepsy pregnancy
motor neuron disease
t di antenatal screening
Diabetes Type 2 ending a pregnancy for foetal abnormality
Young people with long term health conditions screening for sickle cell, beta thalassaemia variants
Cancer & Screening Breastfeeding
breast cancer Making decisions about birth after caesarean
breast screening Heart disease
cervical cancer parents of children with congenital heart disease
cervical screening heart attack
bowel cancer heart failure
bowel screening high blood pressure
lung cancer Immunisation
lymphoma Immunisation
ovarian cancer Intensive care
prostate cancer Patient’s experiences
PSA testing Experiences of family & friends
teenage cancer Living with dying
testicular cancer living with dying
Chronic Health Issues Neurological
chronic pain epilepsy
rheumatoid arthritis carers of people with dementia
HIV motor neurone disease
Diabetes Type 2 stroke
Young Peoples Experiences Mental Health
Sexual health of young people aged 18 - 25 dep ess o
depression
Teenage Cancer Mental health Carers
Diabetes type I in young people Mental Health Service Users
Young people with long term health conditions
Young people with epilepsy PAW, UMCG GZW Sociale Geneeskunde
6. STRUCTUUR IN NEDERLAND
Twee ‘spelers’:
Fonds POG (stichting onder UMCG met Anbi-status):
doel: website met modules cg. healthtalkonline
taak: genereren geld voor onderzoek (subsidies donaties legaten externe
(subsidies, donaties, legaten,
financiers, Webwinkel)
verankering: licentie Nederland voor gebruik DIPEx methodologie
secundaire taken:
intermediair voor verlenen keurmerken aan applicaties van ICT
verstrekken kennis aan deelnemers W b i k l
t kk k i d l Webwinkel
‘Webwinkel’ (commerciële site):
verkoop applicaties e.d. aan doelgroepen (DiDT)
ontwerpen nieuwe applicaties op basis van kennis uit modules
PAW, UMCG GZW Sociale Geneeskunde
9. Aanleiding
• Grote stijging aantal ouderen met dementie
• Zorg is zeer intensief
• Informatiebehoefte
• Persoonlijke ervaring en beleving
10. Doel
• Betrouwbare kwalitatieve informatie over
ervaringen van p
g patiënten met dementie en
mantelzorgers
• Website ‘Praten over Gezondheid’ (POG)
• Twee modules:
– Patiënten/dementerenden
– Mantelzorgers
11. DIPEX-methode
DIPEX methode
• Buddy
B dd
• Klankbordgroep
• Literatuur review
• Maximum variation sampling (N ≈ 40-50)
• Interview – 2 delen:
– Verhalend
– Semi-gestructureerd
• Transcriptie en analyse (CAQDAS en OSOP)
• Website
– ‘Verhalen over’
– ‘Vragen en antwoorden’
• Lancering website
• Updates