Empowering Patient Groups to Contribute to CADTH’s Patient Input Process

Sarah BerglasKnowledge Exchange Officer, CADTH

CADTH SymposiumApril 17, 2012

From licence to listing

Can we afford it?

Asks provincial drug plans

Is it safe? Does it work?

Asks Health Canada

How does it compare to alternatives?

Asks Common Drug Review

Is it reasonably priced?

Asks PMPRB

“What will make me feel better?”

Patients ask different questions

Limited patient-orientated research available

Patients have unique knowledge that can

enlighten and inform HTA

But, challenging to collect, analyse, and

assess alongside quantitative data

Requesting patient input

Seeking:

• Impact of condition on patients & caregivers

• Patients’ experience with current therapy

• Expectations for new drug or experience with it

Issues or outcomes of importance to

patients

How patient input is used in CDR

Patient evidence summarised, used to inform protocol &

included review report

Patient evidence presented, used in deliberations & reflected

in recommendations

CADTH ReviewTeamCADTH ReviewTeam

Expert Committee Expert Committee

Drug PlansDrug PlansPatient

evidence shared

Patient Input SubmissionPatient Input SubmissionCanadian Patient GroupsCanadian Patient Groups

Reasons & recommendations

published

Original & summary input sent to CDEC

Patient evidence shared

Patient evidence shared

Patient evidence shared

Patient evidence shared

Patient evidence shared

CADTH is not alone

Patient Input into Common Drug

Review May 2010

Patient Engagement July 2011

BC PharmaCarePatient InputOctober 2010

Ontario Drug Benefit Program invites Patient Evidence Submissions,

April 2010

Health Canada

Challenge: meaningful participation by groups

Requires:

• In depth knowledge of disease / condition

• Understanding of evidence based medicine & health technologies assessment

• Practical knowledge of how & when to contribute

“Join the Dialogue” – June 2011

Overview of patient input processes at:

Sharing experiences & ideas for new submissions:• Perspectives from Advisory Committees - John Deven &

Brad Neubauer, CDEC and Harlon Davey, Ontario’s CED

• Perspectives from patient groups - COPD Patient Network and Canadian PKU & Allied Disorders

“Join the Dialogue” – June 2011

• How are drug coverage decisions made in Canada?

• Roles of Health Canada, CADTH, PMPRB, and jurisdictional drug plans

• How is patient input used? Other types of evidence?

• Use of clinical evidence

• Economic evaluation

Presentations available at www.cadth.ca/en/events

Directly invited patient groups

Targeted groups

unaware of opportunity

to input

Majority of e-alert subscribers not patient groups

Target audience attended

37%

29%

55%

63%

71%

45%

Sumbitted patient input toCDR

Subscribed to e-alert

Patient grouprepresentative

Yes No

41 unique patient groups

attended

Session objectives met

60%

77%

92%

92%

40%

23%

8%

8%

Preferred workshop format

Felt able to provide patientinput to CDR

Greater appreciation of howpatient input is used

Greater appreciation of howcoverage decisions made

agree/highly agree disagree/neutral

25% increase in patient group subscribers to CADTH e-alert

Conclusions

Patient input helps improve HTA decision making

HTAs should actively engage with patients groups to foster patient input of maximum value

Further reading:

Visit: www.cadth.ca/patientinput

Google: CIHI Strategy for Patient-Oriented Research

HTAi Interest Group on Patient Citizen Involvement

Drummond et.al, IJTAHC 24:3 (2008) 244-258.