using evidence & experience tousing evidence & experience ......2011; weston, 2001) it ti...

Using Evidence & Experience toUsing Evidence & Experience to Inform Patients’ Involvement in Health Decisions

Dawn Stacey RN, PhDAssociate Professor

Director, Ottawa Patient Decision Aids ,Research Group

‘Festival of Evidence & Experience’ June 6, 2012

OutlineOutline• Shared decision makingg

• Evidence to inform decision making

– Ways to communicate evidence

Effect on decisions– Effect on decisions

• Experience to inform decision making

– Patients’ own experiences

– Experiences of others

• The intersection of evidence & experiences• The intersection of evidence & experiences

Shared Decision Makingg

A process by which a

healthcare choice is

made between the

patient and one or more Th f ti t patient and one or more

health professionalsThe crux of patient

centred carece t ed ca e

Facilitated by:Facilitated by:o Patient decision aids

D i i hio Decision coaching

(Legare et al., 2010; Makoul & ( g , ;Clayman 2006; Stacey et al. 2011; Weston, 2001)

I t ti M d l f SDMIntegrative Model of SDMEssential Elements Ideal ElementsEssential Elements

� Inform: problem, options, benefits, risks, costs

Ideal Elements

� Unbiased information and evidence

, ,� Check understanding� Clarify: patient’s values,

and evidence (probabilities)

y p ,preferences, ability, self confidence

� Role definition (desire for involvement)

� Clinician’s knowledge/ recommendationsM k / li itl d f

� Mutual agreement

� Make/ explicitly defer decision

� Arrange follow up� Arrange follow-up

(Makoul & Clayman 2006)

Patient Decision Aids dj t t lt tiPatient Decision Aids adjuncts to consultation

Inform• facts, probabilities

Clarify values•Experiences ask what matters most•Experiences, ask what matters most

Support•Guide in steps, worksheetsp

F t f d i i idFormats for decision aids

1. Print• Passive or interactive• Passive or interactive

2. Linear DVD/Video• Passive• Passive

3. Online/computer-based• Passive or interactivePassive or interactive

• Medical (n=25) Topics of Decision Aids– 10 HRT– 3 atrial fib anti-coag– 1 hypertension

2 di l S i ( 32)

(N=86)

– 2 cardiovascular– 1 osteoporosis– 1 chemotherapy

1 MS

• Screening (n=32)– 12 PSA– 8 BRCA1/2 genetic

– 1 MS– 2 diabetes– 1 schizophrenia– 1 depression

– 5 colon cancer– 1 colon ca genetic– 5 prenatal– 1 depression

– 1 breast ca prevention– 1 osteoarthritis knee– 1 natural health products

– 1 mammography

• Obstetrics (n=4)1 natural health products

• Surgical (n=20)– 4 mastectomy +1 reconstruction

Obstetrics (n 4)– 2 VBAC– 1 termination

1 breech4 mastectomy +1 reconstruction– 2 prophylactic BRCA1/2– 3 prostatectomy– 1 orchiectomy for prostate ca

– 1 breech

• Vaccine (n=2)f

(Stacey et al., 2011)1 orchiectomy for prostate ca

– 3 hysterectomy– 2 dental– 1 circumcision

– 1 infant– 1 Hep B

• Other (n=2)

2011)

– 1 back– 2 coronary revascularization

( )– 1 autologous blood donation– 1 CF referral for transplant

Patient decision aids (86 trials)

Improve decision Patients 39% less passive in decisionsquality

14% higher

passive in decisions

Reduce over-usegknowledge

74% more realistic

Reduce over use-20% surgery-15% PSA 74% more realistic

expectations-15% PSA -27% HRT

25% better match of values & choices

Potential to reduce under-useunder use

(Stacey et al., 2011 Cochrane Review Patient Decision Aids)( y , )

Of 5 studies, using 3rd party g p yobserver measures…2 had an impact

Study Intervention 1 Intervention 2 Standard 95% CI

2 had an impact

Effect Size

Stacey 2006

Multifaceted intervention

Usual Care 2.11 (1.30; 2 90)2006 intervention

Patient-mediated intervention,

educational meeting,

2.90)

gaudit and feedback

Nannenga 2009

Single intervention

Single intervention

1.06 (0.62; 1.50)2009 intervention

Patient-mediated intervention:

Statin Choice decision

interventionPatient-mediated

intervention: Standard Mayo

1.50)

aid patient education pamphlet

(Legare Ratte Stacey et al 2010 Cochrane review)(Legare, Ratte, Stacey, et al. 2010, Cochrane review)

Interventions to increase SDM:Interventions to increase SDM:a patient perspectivep p p

Of 21 RCTs, 3 had positive effect:

Bieber 2006 Krones 2008 Loh 2007Bieber 2006 Krones 2008 Loh 2007

Compared to Pt mediated l

Control Usual carealone

Educational meeting

X X Xmeeting

Pt mediated intervention

X X X

Audit /feedback X

74% 227% P=0 003

(Legare, Turcotte, Stacey, Ratte, Kryworuchko, Graham 2012)

74% 227% P=0.003

( g , , y, , y , )

Decision coachingDecision coaching

Develops patients’ skills in deliberating about options,

i f lt tipreparing for a consultation, and implementing change.

Trained facilitators are supportive but non-directivesupportive but non directive

Delivery: face to face, groups, telephone, email, internet

(O’Connor et al., 2008; Stacey et al., 2008; 2012)

(10 trials)

- Compared to usual care, decision coaching improves knowledge.

-Improvement in knowledge similar when Improvement in knowledge similar when coaching compared to decision aids

O f h i -Outcomes for other comparisons are more variable – some trials show positive effects

d th t diff(Stacey et al., 2012, Med Dec Making)

and others report no difference

22 Reviews: Clinical Decision Making Interventions0 5 10 15 20 Examples of interventions:

- Patient decision aidsKnowledge

Patient decision aids

- Training clinicians in communication skillsExperience

UseHealthService

communication skills

- Question prompts / coaching to develop patients’ skills in

Behaviour andHealth Status

PositiveMixedNo Effect

to develop patients skills in preparing for consults, deliberating about options, implementing change

OutlineOutline• Shared decision making


– Ways to communicate evidence

Effect on decisions– Effect on decisions



f h– Experiences of others

• The intersection of evidence & experienceso o d & p

“Without numbers consumers are left flying blind”Without numbers, consumers are left flying blind (Schwartz & Woloshin, Welch, 2009; p.184)

IPDAS presenting probabilitiesThe patient decision aid presents probabilities …

IPDAS presenting probabilities

1. …using event rates…

2. …using the same denominator

3. …over the same period of time

4. …with uncertainty4. …with uncertainty

5. …using visual diagrams (e.g. faces, bar charts)

6 using the same scales6. …using the same scales

7. …with more than 1 way of viewing probabilities (e.g. words, numbers, diagrams).

8. …based on patient’s own situation (e.g. specific to their age or severity of their disease)

9 using both positive and negative frames9. …using both positive and negative frames

(IPDAS - Elwyn et al (2006) in BMJ 333(7565):417)(IPDAS Elwyn et al., (2006) in BMJ 333(7565):417)(Presenting Probabilities – Trevena et al. 2006 in J Eval Clin Practice)

(Schwartz &(Schwartz & Woloshin, Welch, 2009)

The Decision BoxThe Decision BoxGiguere et al. BMC Med Inform Decis Mak 2011, 11:17

Patient decision aids (86 trials)


14% higher



74% more realistic






Accurate Risk PerceptionsAccurate Risk Perceptions

2011- 14 RCTs showed RR 1.74 [1.46, 2.08) 2009 = RR 1.7 [1.3, 2.2]

But evidence is not enough!ut e de ce s ot e oug



W t i t id– Ways to communicate evidence

– Effect on decisions





NICE Clinical Practice Guideline 2012

Patient experience in adult NHS Patient experience in adult NHS services: improving the experience…

• Elements of high quality care that matter to patients– Their experience– Effectiveness of interventions– Safe delivery of healthcare

• Experience is complex and multi-factoral– Service factors: access, quality of information, shared

decision making skills of health professionalsdecision making skills of health professionals– Individual factors: previous experience

• Uses client centred care to define experience• Uses client-centred care to define experience

• UK aiming to include patient experience as measureable outcome – but no robust measure (satisfaction inadequate)outcome – but no robust measure (satisfaction inadequate)

P ttin p ti nts fi st Putting patients first BMJ editorial

Saskatchewan CanadaCanada

Saskatchewan, Canada

Clarifying & Communicating Clarifying & Communicating Values

Patients’ decision-focused ‘values’

“Detailed insight into the patient’s attitudes about the patient’s attitudes about the relative desirability of each of h bl b f d hthe possible benefits and harms

- or attributes - inherent in each option”

(Llewellyn Thomas 2009 chpt 18)(Llewellyn-Thomas, 2009, chpt 18)

Values Clarification MethodsValues Clarification Methods(Llewellyn-Thomas 2009 chpt 18)

Non-interactive / implicit Interactive / explicit

Patient Decision Utility-based Non-utility-based

testimonials aids that describe options

Classic decision

Explicit social matchingConjoint

analysisoptions decision analysis Leaning

scale

analysis

scale

Balance t h i

Threshold techniques

TTO techniques

Analytic

- TTO

Analytic hierarchy

IPDAS Cl if i V lIPDAS Clarifying Values(clarify what matters most)( y )

The patient decision aid…

1 describes the procedures and outcomes to help 1. …describes the procedures and outcomes to help patients imagine what it is like to experience their physical, emotional, and social effects.

2. …asks patients to consider which positive and negative features matter mostnegative features matter most

(Elwyn et al (2006) in BMJ 333(7565):417)(Elwyn et al., (2006) in BMJ 333(7565):417)

Patient Decision Aids dj t t liPatient Decision Aids adjuncts to counseling

Inform• facts, probabilities

Clarify values•Experiences ask what matters most•Experiences, ask what matters most

Support•Guide in steps, worksheetsp

Consider which positive and negative Consider which positive and negative features matter most

Stacey, D. et al. BMJ 2008;0:bmj.39520.701748.94v2-bmj.39520.701748.94

Patient decision aids (86 trials)(86 trials)


14% higher



74% more realistic






U ing Pe on l Sto ie /N ti eUsing Personal Stories/Narratives

• Narratives provide– others’ experiences relevant to the decision

• Narratives from a range of ‘others’ - carers, family, f i lprofessionals

IPDAS Background Update Group – in press for 2012IPDAS Background Update Group in press for 2012Bekker, Winterbottom, J Fowler, Feldman-Stewart, Butow, Shaffer, Jibaja-Weiss, Dillard

Personal stories during the gconsultation

• “Doctor what do you think I should do?”

• I don’t know it depends on what is most important to youy– If you were like my mother, she is… and she would

say…– If you were like my wife, she is … and she would

say…OOr

– Some women…Oth – Other women…

Others’ experiences on Internetp

https://www.healthcrossroads.com/example/crossroad.aspx?contentGUID=fc326615-5b29-47f1-87c3-9a3e2d946919

IPDAS Patient Stories

The patient decision aidThe patient decision aid……provides stories that represent a range of experiences

(positive and negative)(positive and negative)

…describes that the patients gave informed consent to include their storiestheir stories

(Elwyn et al (2006) in BMJ 333(7565):417)(Elwyn et al., (2006) in BMJ 333(7565):417)

Personal stories in publicly Personal stories in publicly available patient decision aidspKhangura, Bennett, Stacey, O’Connor 2008

Using 2007 Cochrane A to Z Inventory: t tifi d b d l d d l l dstratified by developer and randomly sampled

E l i t i i d i i idExploring stories in decision aids

(Kh t l 2008)(Khangura et al., 2008)







– Experiences of others’Experiences of others

• The intersection of evidence & experiences

Evidence-based clinical decisionsEvidence-based clinical decisions(Guyatt, Haynes, DiCenso from McMaster University)

Clinical state settingClinical state, setting, & circumstances Patient preferences

& actions

Healthcare ProfessionalsProfessionals

Research evidence Healthcare resources

47

S mm & q e tionSummary & questions• Communicating probabilities is important BUT with what • Communicating probabilities is important BUT with what

evidence?– Systematic reviewsy– Local hospital data

• Patients own life experiences influence their preferences Patients own life experiences influence their preferences BUT how are they acknowledged in decision making?

• Patients want to hear of others’ experiences BUT how • Patients want to hear of others experiences BUT how do we synthesize (qualitative systematic reviews?) and communicate experiences while reducing potential bias?

• Interventions (e.g. patient decision aids, decision coaching, shared decision making) incorporate evidence and experience BUT how do we ensure they are not biasing the patient?

http://decisionaid.ohri.ca

using evidence & experience tousing evidence & experience ......2011; weston, 2001) it ti...

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