explaining decisions
TRANSCRIPT
Explaining decisions
Informing the public
The role of HTA organisations in consumer
information
Ann Single
Communication & Public Involvement Consultant
Health Technology Board for
Scotland consumer information
Two roles
1. Ensure those with skills &
responsibility for patient
communication have access to
information from the best scientific
evidence
2. Ensure organisation’s processes are
open to public scrutiny.
Consumer information
strategy
Four elements
● A transparent ethical framework for
HTAs based on agreed values
● Involvement of patient groups, health
professional & public
● Consumer-friendly publications
● Established information networks
Ethical framework
Built on organisational values
● Core convictions & culture of an organisation
● Characterise its policies, procedures & processes
● Obvious in all interactions
ethical framework ● public involvement ● publications ● networks
Creation of values
staff
Board
interest groups
Next step: public ethical framework ● public involvement ● publications ● networks
HTBS values
● Professionalism: We strive to achieve excellence through individual & team competencies by being conscientious, accurate, & efficient
● Usefulness: We aim to provide real & appreciable benefits for the health of the Scottish people
ethical framework ● public involvement ● publications ● networks
HTBS values continued
● Interdependence: We build productive relationships with immediate colleagues & the wider community, proactively considering the broader implications of our work. We recognise the whole is greater than the sum of all the parts
● Engagement: We promote dialogue & provide opportunities to involve all stakeholders (e.g. health service users, health professionals, policy makers, & manufacturers)
ethical framework ● public involvement ● publications ● networks
HTBS values continued
● Sensitivity: We are sensitive to & respect the feelings, needs, opinions & beliefs of individuals & organisations. We respect & encourage diversity
● Learning: We encourage the sharing & development of knowledge & experience to enable the Scottish people to improve the Nation’s health.
● Transparency: We communicate clearly the rationale for our decisions & actions
HTBS public involvement
Began
● Scottish Executive: Patient focus public involvement
● Need to understand social & ethical consequences in an HTA
Became
● Essential for engagement & patient-focused service redesign
ethical framework ● public involvement ● publications ● networks
Involvement from start to
finish
● Submission of topic
● Interpretation of evidence
Consultation
Topic specific group
● Communication of advice
Comment on drafts
Dissemination of information
● Feedback
ethical framework ● public involvement ● publications ● networks
Aim of publication
Understanding our advice
● For people who don’t have specialist knowledge in the area
● Explain what advice means for people using technology
● Show how advice was formed
● Explain what value judgments HTBS applied to evidence (where it came from & how it was used)
ethical framework ● public involvement ● publications ● networks
Understanding our advice
content
● Purpose of document
● Health technology (& side effects)
● Advice to health service
● How the HTBS Advice was formed
● Evidence used
● Sources of support
● Frequently used words
● HTBS
● Feedback
● Values
Using established networks
● Involved key patient groups at outset of HTA
● Patient groups able to keep networks informed of progress & feed in issues to HTA
● Worked with key patient interest groups to create & disseminate ‘Understanding our Advice’
● Provided support & information for patient interest group publications
ethical framework ● public involvement ● publications ● networks
Advising on consumer
information
● Research identified consumer
information needs & preferences
● Advice contained ‘Information needs’
ethical framework ● public involvement ● publications ● networks
What we achieved
● An information resource for non-experts
● Good relationships with patient & consumer interest groups
● Promotion of evidence based information
● Foundations of a culture of openness that enabled the organisation’s values, & in turn recommendations, to be understood &/or challenged by the community it served.
What we learnt
Benefits of involving public
● Establishes links into key consumer information providers quickly
● Focuses publication content & enhances clarity
● Builds good will & understanding
Benefits of separating roles
● Leaves patient information to the experts
● Focuses communication activities on organisational priorities, eg greater understanding of HTA
What we learnt
● Some organisations are highly skilled in
consumer/patient information
Unlikely to be an HTA organization
● An information hungry public may be
very supportive of any information
Regardless of quality, listen to your
critics, call on experts
● Manage expectations
Be clear about information aims &
involvement roles
Finally, we learnt
The more we engaged with consumers
the more we understood their
information needs
&
the more they understood their
treatment, the health service, HTAs,
us …