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Project ‘Help, Dement!
Patiënt en mantelzorger aan het woord’




        Manna Alma, onderzoeker
      Griet-Anne Banga, onderzoeker
      Auke Wiegersma, p j
               g      , projectleider
DIPEx – de achtergrond


                  Websites:

            www.healthtalkonline.org
                                   g
             www.youthhealthtalk.org
(www.praten-over-gezondheid.org/nl = Fonds ‘POG’)




                                           PAW, UMCG GZW Sociale Geneeskunde
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
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
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
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
INTERACTIE POG/WEBWINKEL


      POG                            Webwinkel
   Fonds (Anbi)                      commercieel


      €=                  €
   NIEUWE MODULES       afdracht
                                        rapport
                        kennis
                                                     MKB2


                                          MKB1

                       onderzoek                   MKB3

                    TG0 - keurmerk
‘Help, Dement!
Patiënt
P tië t en mantelzorger aan h t woord’
               t l          het     d’

         De
         D DIPEX methode
                   th d
Aanleiding
• Grote stijging aantal ouderen met dementie
• Zorg is zeer intensief
• Informatiebehoefte

• Persoonlijke ervaring en beleving
Doel
• Betrouwbare kwalitatieve informatie over
  ervaringen van p
         g       patiënten met dementie en
  mantelzorgers

• Website ‘Praten over Gezondheid’ (POG)
• Twee modules:
  – Patiënten/dementerenden
  – Mantelzorgers
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
Demonstratie website
         link
Bedankt voor uw aandacht!

Contactgegevens:

Manna Alma              Griet-Anne Banga
m.a.alma@med.umcg.nl    g.a.banga@med.umcg.nl
Tel.: +31 50 363 8922   Tel.: +31 50 363 3063

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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
  • 7. INTERACTIE POG/WEBWINKEL POG Webwinkel Fonds (Anbi) commercieel €= € NIEUWE MODULES afdracht rapport kennis MKB2 MKB1 onderzoek MKB3 TG0 - keurmerk
  • 8. ‘Help, Dement! Patiënt P tië t en mantelzorger aan h t woord’ t l het d’ De D DIPEX methode th d
  • 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
  • 13. Bedankt voor uw aandacht! Contactgegevens: Manna Alma Griet-Anne Banga m.a.alma@med.umcg.nl g.a.banga@med.umcg.nl Tel.: +31 50 363 8922 Tel.: +31 50 363 3063