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Explaining decisions
              Informing the public
              The role of HTA organisations in consumer
              information


Ann Single
Communication & Public Involvement Consultant
singlehaworth@yahoo.com.au
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

                   interest groups
                         Board


                            staff




                                               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 …

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Explaining Decisions

  • 1. Explaining decisions Informing the public The role of HTA organisations in consumer information Ann Single Communication & Public Involvement Consultant singlehaworth@yahoo.com.au
  • 2. 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.
  • 3. 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
  • 4. 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
  • 5. Creation of values interest groups Board staff Next step: public ethical framework ● public involvement ● publications ● networks
  • 6. 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
  • 7. 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
  • 8. 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
  • 9. 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
  • 10. 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
  • 11. 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
  • 12. 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
  • 13. 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
  • 14. Advising on consumer information ● Research identified consumer information needs & preferences ● Advice contained ‘Information needs’ ethical framework ● public involvement ● publications ● networks
  • 15. 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.
  • 16. 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
  • 17. 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
  • 18. 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 …