Using Research to Better Understand Service User Profile Bláithín Gallagher MPhil, PhD Desmond Kenny MSc, MBA

1. Using Research to Better Understand Service User Profile Bláithín Gallagher MPhil, PhD Desmond Kenny MSc, MBA

2. Whosoever desires constant success must change his conduct with the times. Niccolo Machiavelli

3. Ageing Population Global population 60+ trebled over last 50 years 1950: 205m; 2005: 606m (15.3%); 2050: 2bn (29.3%) Greatest growth in oldest old 80+ 2005: 2.7% (88m) to 2050 6.7% (402 m) 100+, 2005: 265.000: 2050: 3.7m (14-fold increase) 100+ UK 1911 100, 2001, 8600, 2031 48,000 Europe "oldest" region in the world. EU27 Median Age, 2008: 40.4 yrs 2060: 47.9 yrs EU elderly dependency ratio 2004: 24.5% 2050 52.8%.

4. Ageing & Vision Loss Global Population of Blind and Low Vision 161 million people with vision impairment worldwide • 124m low vision; 37m are blind. • 153 m VI - uncorrected refractive error. • Global population of VI expected to double by 2020 Europe: 2.7m blind; 12.8m low vision. Vision impairment increases dramatically with age. Approx 4% aged 60+ are thought to be blind. (WHO:1999)

5. Important Factors Ageing highly correlated with vision loss Changing demographics → Increase in VI Population → Increased burden on eye care services Impact of Vision Impairment Personal, Social, Psychological & Economic Imperative that NCBI reviews service user profile

6. What we noticed NCBI Service user base increasing 12% year-on-year.  HSE income to agency decreasing Major increase in older service users with acquired vision loss (mainly age related)  Incidence of total sight loss (blindness) among service users reducing Low Vision predominant among service users. Interventions & services very different between groups Service need to change address difference in needs

7. Important Factors Necessary to Investigate & plan how best the state & NCBI can address the delivery of services to meet the needs of the growing populaiton of people with low vision while maintaining the more costly services to people who are blind. Evidence essential to plan for the future.  Need to represent changing trends to government Need to speak to funders & policy makers in a language that they understand

8. Research2008 Eyes on the Future (Jackson & O'Brien, et al) Study of prevalence of vision impairment in Ireland 30,000 (estd) 45 years + Vision Loss in Ireland due to URE 9,500 (approx) legally blind Figures underestimate the true extent of blindness by 30-40%. Annual Costs of Sight Loss Cost of care est'd between €300 & €500 million Cost of social benefits and productivity losses €100 - €200 million True cost €140 and €280 million(est'd) due to under-registration PROJECTIONS Population of people with vision loss 55+ will increase Blind (WHO) 43% (2016) 116% (2026) 170% (2031) Low Vision (WHO) 45% 2016, 125% (2026) 180% (2031)

9. More research was needed We wanted to forecast trends in the key areas of: Primary ocular pathologies leading to sight loss AMD, Diabetic Retinopathy, Glaucoma, Cataract.  And Cost to the state of sight loss from direct medical and rehabilitation and welfare costs to indirect costs of carers, tax foregone and DALYs Very little statistical modelling of disease done in Ireland Needed consultants with experience in this area

10. Research Authors Access Economics (Deloitte) Leading health economics consultancy International presence, Highly regarded for independent, professional and high quality health economics outputs. Completed five economic cost evaluations and several cost effectiveness analyses Australia, Canada, Japan, the UK, USA. Global cost-of-illness study for visual impairment. peer-reviewed publications

11. 2011 Cost of Sight Loss Deloitte Access Economics Results obtained through a combination of information taken from NCBI register, 2006 National Disability Survey, Previous Irish studies of vision impairment, and Deloitte Access Economics’ estimates of vision loss in other countries Extrapolation of incidence of sight loss & expected change from international trends with similar populations. Estimated the prevalence of people with a visual acuity below 6/12. Estimated the real financial cost of vision impairment as €386 million

12. Three categories of vision loss Mild vision impairment (6/18 < visual acuity ≤ 6/12) Moderate vision impairment (6/60< visual acuity ≤ 6/18) Blindness (visual acuity < 6/60). 2010 ROI * 12,995 blind people; * 54,681 people with moderate vision impairment; * 157,156 people with mild vision impairment; * Total 224,832 people vision impairment . Projected to grow to 271,996 people by 2020, (including 187,928 people with mild vision loss)

13. Distribution of Blindness by Primary Cause in 2010 (all ages)

14. 2011 Cost of Sight Loss Deloitte Access Economics Estimated total annual cost of vision impairment €386 million €117 million in health care expenditure (direct costs) & €269 million in other (indirect) costs Health care expenditure, Value of caregiver time, Lost productivity (unemployment) due to impaired vision, (est 43% of total financial cost Efficiency losses due to government-funded eye care Welfare payments 2020 expected to increase to €449 million (in real terms) (16%)

15. Financial Costs of Vision Impairment and Blindness in the ROI in 2010

16. DALY Burdens Due to Vision Impairment and Blindness in 2010

17. What have we done so far with results? Emphasised to government the necessity of a vision strategy which would recognise and respond to the seriousness of the sight loss issue.  Took the findings directly to Minister Reilly before he launched the findings of the study.  Minister Reilly committed to create a clinical lead in ophthalmology in the HSE and to review the need for a strategy after the patient pathways had been reviewed

18. We stated what needed to be done Much vision loss can be avoided or treated reduce the significant personal, social and economic burdens of vision loss in the Republic of Ireland. More research funding to increase effective prevention & treatment strategies Elevation of vision health as a public health issue, Public better informed to maintain ocular health By investing in the right strategies, the rising trends of vision impairment could be reversed.

19. How else are results being used? Study is used by ophthalmologists in making their cases for additional consultants or for the application of new therapies.  Findings have been fed into the TILDA research Finding are being used by NCBI to plan its new forms of service delivery.

20. Changes Afoot? NCBI service user base has increased dramatically 6,000 (2004) to 16200 (2011).  No increase in staff Decrease in income from HSE approx 14% recent years. Increase in numbers & income decrease is managed by changing current systems and methods of service delivery.  Shift to centre based service provision Development of Regional Centres

21. Future Research NCBI will shortly commence a study that will explore the cost of blindness as opposed to low vision “Cost of sight loss” Report indicates that the cost of sight loss across the three categories is an average of a little over €9,000 per annum.  Studies else where (particular in Finland) put the cost of blindness (total sight loss) at closer to €22,000 per annum.

22. Benefits of Such Research Ensures service user & provider & funder needs are satisfied. Can better understand context in which the organisation operating. Provides information about service users’ current and future needs Can be used to inform policy. Enables actions to be based on true (evidenced) needs, not assumptions or outdated views.

23. Benefits of Research Minimise risk/ facilitates risk management Facilitate less risk in the transfer of ideas to execution ensuring better long-term success and less wasted capacity and resources. Can provide information about the required resources and how to use them to best capacity. Allow organisation to assess the results of its activities.