NHLDP Netherlands:Applying Ophelia in Rheumatology care
Mark Bakker Dr. Polina PutrikProf. dr. Annelies Boonen
Key staff
Dr. Polina Putrik Prof. dr. Annelies Boonen Mark Bakker
Partner Organisations
Dr. Marc KokHanneke Voorneveld
Prof. dr. Mart van der LaarDr. Harald Vonkeman
Alliantie Gezondheidsvaardigheden, ReumaZorg Nederland
Background- One in three people in The
Netherlands face challenges related to health literacy (Heijmans, Brabers & Rademakers, 2018)
- Rheumatic and Musculoskeletal diseases account for over 20% of the global years lived with disability (Vos et al., 2012)
- Musculoskeletal diseases are more prevalent among the lower educated (Putrik et al., 2018)
- Prescription of biologicalDMARDs at a later stage, at higher disease activity(Putrik et al., 2016)
- Possible explanation forthe gap: health literacy
Background
Cum
ulat
ive
HR
Time
Aims
• To address health literacy needs and co-design a “health literate” rheumatology clinic
Sub-aims:• To increase awareness about the importance of
health literacy• To disseminate our lessons learned
Context & focus
- Patients with rheumatic conditions in specialised (outpatient) care:- Spondyloarthritis (SpA) - Rheumatoid Arthritis (RA)- Gout
Needs assessment population
(HLQ)
Generate patient profiles
Discuss profiles and perceptions
Co-design, develop and implement
interventionsPerception healthcare providers
• OPtimising HEalth LIteracy and Access (Ophelia) approach (Osborne et al., 2013; Batterham et al., 2014)
• Design as inclusive as possible
Method
Address needs before, during, and after care moment
Method
• Perception of healthcare providers
Current status and timeline
Prep
arations
First data
Prep
arationsSpA
RA
Lessons learnedStrengths
Minimised selection biasInclusive, personal, supportive
Enhanced heterogeneity / transferability
A diverse patient population, within and between centres
Expert partners
Innovation
Close contact with data & context
Weaknesses
Small-scaled with a small research team
Setup for data collection is time-consuming
Time investment needed by medical staff
Lessons learnedOpportunities
Increasing awareness at policy level
Scaling up & partnerships
Further engaging with patients
Threats
“What’s the use?”
Cost of investment vs. expected outcomes
Time investment & commitment by medical staff
Future partnerships & scaling up potential
• Sponsors• Other departments in current hospitals• NVZ / NFU: Dutch hospital federations• Expand current partnerships
Conclusions
• Successful first steps – energy to move further!
• Workshops are coming up in 2019 – finding solutions
• Eager to collaborate with other specialties
References
Batterham, R.W., Buchbinder, R., Beauchamp, A., Dodson, S., Elsworth, G.R., & Osborne, R.H. (2014). The OPtimising HEalth LIterAcy (Ophelia) process: study protocol for using health literacy profiling and community engagement to create and implement health reform. BMC Public Health 14:694.
Heijmans, M., Brabers, A., & Rademakers, J. (2018). Health Literacy in Nederland. Utrecht, Netherlands: Nivel Osborne, R.H., Batterham, R.W., Elsworth, G.R., Hawkins, M., & Buchbinder, R. (2013). The grounded psychometric
development and initial validation of the Health Literacy Questionnaire (HLQ). BMC Public Health. 13:658. Putrik, P., Ramiro, S., Lie, E., Keszei, A.P., Kvien, T.K., . . . van der Heijde, D. (2016). Less educated and older
patients have reduced access to biologic DMARDs even in a country with highly developed social welfare (Norway): results from Norwegian cohort study NOR-DMARD. Rheumatology (Oxford)
Putrik, P., Ramiro, S., Chorus, A. M., Keszei, A. P., & Boonen, A. (2018). Socio-economic gradients in the presence of musculoskeletal and other chronic diseases: results from a cross-sectional study in the Netherlands. Clinical Rheumatology, 37(12), 3173-3182. doi:10.1007/s10067-018-4158-3
Vos, T., Flaxman, A. D., Naghavi, M., Lozano, R., Michaud, C., Ezzati, M., . . . Murray, C. J. L. (2012). Years lived with disability (YLDs) for 1160 sequelae of 289 diseases and injuries 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010. The Lancet, 380(9859), 2163-2196. doi:https://doi.org/10.1016/S0140-6736(12)61729-2