Patient involvement

– the good, the bad and the ugly

Sara Riggare, MSc,

PhD candidate, Karolinska Institutet

Chief Patient Officer, Nerve

Patient involvement

– the good, the bad and the ugly

Sara Riggare, MSc,

PhD candidate, Karolinska Institutet

Chief Patient Officer, Nerve

Patient involvement

– the good, the bad and the ugly

Sara Riggare, MSc,

PhD candidate, Karolinska Institutet

Chief Patient Officer, Nerve

Sara Riggare

Sara Riggare

Sara Riggare

Time with neurologist

Sara Riggare

Time with neurologist 2012, n=135

0 mins/year

5-60 mins/year

61-120 mins/year

121-180 mins/year

>181 mins/year

Time with neurologist

Sufficient

Insufficient

(Riggare, 2014, unpublished)

Sara Riggare

Sara Riggare

Sara Riggare

44% of the population has one or more chronic

conditions

25% have 2 or more chronic conditions

80% of total healthcare costs

Sara Riggare

Chronic disease in Sweden

Ref: Vårdanalys, 2014. ”VIP i vården? – Om utmaningar i vården av

personer med kronisk sjukdom” (in Swedish)

Sara Riggare

Sara Riggare

Sara Riggare

Sara Riggare

Increasing cost?

Sara Riggare

Knowledge

Sara Riggare

Self-reported knowledge

Insufficientn=52

Sufficientn=79

(Riggare, 2014, unpublished)

Knowledge

Sara Riggare

Insufficient knowledgen=52

Expecting informationfrom healthcare

Expecting to acquireknowledge oneself

Sufficient knowledgen=79

Knowledge acquired viahealthcare

Self-acquiredknowledge

(Riggare, 2014, unpublished)

Sara Riggare

P=0.963 (Mann-Whitney U) P<0.05 (Mann-Whitney U)

0

5

10

15

20

<1 year 1-3 years 4-6 years 7-10 years >10 years

Time since diagnosis

Insufficient knowledgeExpecting to acquireknowledge oneself, n=5

Expecting information fromhealthcare, n=47

0

5

10

15

20

25

<1 year 1-3 years 4-6 years 7-10 years >10 years

Time since diagnosis

Sufficent knowledgeSelf-acquiredknowledge, n=59

Knowledge acquired viahealthcare, n=20

(Riggare, 2014, unpublished)

”The holy grail of medicine”?

Sara Riggare

Take home message

Sara Riggare

Sara Riggare

Thank you for listening!

sara.riggare@ki.se

www.riggare.se

Sara Riggare