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Health Services Management Centre and the
               Nuffield Trust
Jo Ellins
Which elements/aspects of priority setting:

   Do you currently involve patients and the public in?

   Could you involve patients and the public in?

   Might patients and public want to be involved in?
Strategic
                   planning



Monitoring and      Patients      Priority setting
 evaluation         and the          decisions
                     public


                 Implementation
                      phase
1.   Instrumental benefits: better, fairer, more
     legitimate decisions

2.   Political benefits: fostering accountability,
     transparency, citizenship

3.   Educative benefits: promoting more
     realistic public expectations
(Williams, Robinson & Dickinson, forthcoming)
 Willingness to participate in decision making varies
  Key motivation is to ensure that services better
   meet people’s needs
  More comfortable participating in system and
   programme level decisions, than those affecting
   individual patients
  Little desire to share responsibility for decisions,
   especially as these increase in complexity
  But do want to have a voice in the process and for
   decisions to be more open and transparent
Litva and colleagues, 2002
Information         Consultation         Participation
Flow of information     One way             One way              Two way
                        Agency     public   Agency      public   Agency        public

Purpose                 Letting people      Getting a snapshot   Engaging in
                        know and raising    of patient and       dialogue or
                        awareness           public views         negotiation
Individual (patients)

Collective (public)



Adapted from Rowe and Frewer, 2005
   Can you map the framework onto the
    activities you have identified
     What is their purpose?
     Who are you involving/would you involve?

   Does the framework suggest any other points
    of involvement you hadn’t initially
    considered?
Information           Consultation          Participation
Flow of information     One way               One way               Two way
                        Agency      public    Agency      public    Agency        public

Purpose                 Letting people        Getting a snapshot    Engaging in
                        know and raising      of patient and        dialogue or
                        awareness             public views          negotiation
Individual (patients)

Collective (public)

How?                    Leaflets, websites,   Surveys, focus        Citizens juries,
                        local media,          groups, public        deliberative polling,
                        roadshows,            meetings,             discrete choice
                        noticeboards,         complaints, opinion   exercises, Delphi
                        newsletters           polls                 methods
Information           Consultation          Participation
Flow of information     One way               One way               Two way
                        Agency      public    Agency      public    Agency        public

Purpose                 Letting people        Getting a snapshot    Engaging in
                                                                    Opportunities for
                        know and raising      of patient and        dialogue or
                                                                      information,
                        awareness             public views          negotiation
                                                                     reflection and
Individual (patients)                                                 deliberation


Collective (public)

How?                    Leaflets, websites,   Surveys, focus        Citizens juries,
                        local media,          groups, public        deliberative polling,
                        roadshows,            meetings,             discrete choice
                        noticeboards,         complaints, opinion   exercises, Delphi
                        newsletters           polls                 methods
Information           Consultation          Participation
Flow of information     One way               One way               Two way
                        Agency      public    Agency      public    Agency        public

Purpose                 Letting people
                                     Informing Getting a snapshot   Engaging in
                                                                    Opportunities for
                        know and raising asof patient and
                                preferences, well                   dialogue or
                                                                      information,
                        awareness capturing them; views
                                as             public               negotiation
                                                                     reflection and
                               participants can, and                  deliberation
Individual (patients)            often do, change
                                    their views
Collective (public)

How?                    Leaflets, websites,   Surveys, focus        Citizens juries,
                        local media,          groups, public        deliberative polling,
                        roadshows,            meetings,             discrete choice
                        noticeboards,         complaints, opinion   exercises, Delphi
                        newsletters           polls                 methods
Information           Consultation          Participation
Flow of information     One way               One way               Two way
                        Agency      public    Agency      public    Agency        public

Purpose                 Letting people
                                     Informing Getting a snapshot   Engaging in
                                                                    Opportunities for
                        know and raising asof patient and
                                preferences, well                   dialogue or
                                                                      information,
                        awareness capturing them; views
                                as             public               negotiation
                                                                     reflection and
                               participants can, and                  deliberation
Individual (patients)            often do, change
                                    their views
Collective (public)

How?                              More suitable for
                        Leaflets, websites, Surveys, focus          Citizens juries,
                                 decisions which are public
                        local media,            groups,             deliberative polling,
                                 complex, contested
                        roadshows,              meetings,           discrete choice
                                  and require trade-
                        noticeboards, offs complaints, opinion      exercises, Delphi
                        newsletters             polls               methods
   Set out with a clear idea about what the public is
    being asked to do
   The ‘right’ method is the one that suits the aims,
    target group and circumstances
   Make use of local networks and expertise
   Have a clear rationale for inviting/selecting
    participants (and for exclusions)
   Clarity with participants about other
    inputs/influences in the decision-making process
   Communicate how decisions have been made and
    where public views have been considered
Can do                   Have the resources and        Capacity building, training
                         knowledge to participate      and support
Like to                  Have a sense of            Building visibility, trust,
                         attachment that reinforces relationships
                         participation
Enabled to               Provided with the             Investing in infrastructures,
                         opportunity for               groups and networks
                         participation
Asked to                 Mobilised by official bodies Opportunities that are
                         or voluntary groups          appealing, engaging and
                                                      appropriate; getting the
                                                      ‘ask’ right
Responded to             See evidence that their       Feedback on how decisions
                         views have been               were made and views were
                         considered                    considered

Adapted from Lowndes, Pratchett and Stoker, 2006
   Take one of the activities identified:

     How would you involve patients and the public in
     this activity?

     What factors would enhance (or reduce) the
     effectiveness of your approach?
 Litva, A and colleagues (2002) ‘The public is too
  subjective: public involvement at different levels of
  health care decision making’, Social Science and
  Medicine, 54: 1825-37.
 Lowndes V, Pratchett L and Stoker G (2006)
  ‘Diagnosing and remedying the failing of official
  participation schemes: The CLEAR framework’, Social
  Policy & Society, vol 5, 281–291
 Rowe, G. and Frewer, L. (2005) ‘A typology of public
  engagement mechanisms’, Science, Technology and
  Human Values, vol 30, pp 251-290.
 Williams I, Robinson S and Dickinson H (forthcoming)
  Rationing in Health Care, Bristol: Policy Press

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Involving Patients in Health Services Priority Setting

  • 1. Health Services Management Centre and the Nuffield Trust
  • 3. Which elements/aspects of priority setting:  Do you currently involve patients and the public in?  Could you involve patients and the public in?  Might patients and public want to be involved in?
  • 4. Strategic planning Monitoring and Patients Priority setting evaluation and the decisions public Implementation phase
  • 5. 1. Instrumental benefits: better, fairer, more legitimate decisions 2. Political benefits: fostering accountability, transparency, citizenship 3. Educative benefits: promoting more realistic public expectations (Williams, Robinson & Dickinson, forthcoming)
  • 6.  Willingness to participate in decision making varies  Key motivation is to ensure that services better meet people’s needs  More comfortable participating in system and programme level decisions, than those affecting individual patients  Little desire to share responsibility for decisions, especially as these increase in complexity  But do want to have a voice in the process and for decisions to be more open and transparent Litva and colleagues, 2002
  • 7. Information Consultation Participation Flow of information One way One way Two way Agency public Agency public Agency public Purpose Letting people Getting a snapshot Engaging in know and raising of patient and dialogue or awareness public views negotiation Individual (patients) Collective (public) Adapted from Rowe and Frewer, 2005
  • 8. Can you map the framework onto the activities you have identified  What is their purpose?  Who are you involving/would you involve?  Does the framework suggest any other points of involvement you hadn’t initially considered?
  • 9. Information Consultation Participation Flow of information One way One way Two way Agency public Agency public Agency public Purpose Letting people Getting a snapshot Engaging in know and raising of patient and dialogue or awareness public views negotiation Individual (patients) Collective (public) How? Leaflets, websites, Surveys, focus Citizens juries, local media, groups, public deliberative polling, roadshows, meetings, discrete choice noticeboards, complaints, opinion exercises, Delphi newsletters polls methods
  • 10. Information Consultation Participation Flow of information One way One way Two way Agency public Agency public Agency public Purpose Letting people Getting a snapshot Engaging in Opportunities for know and raising of patient and dialogue or information, awareness public views negotiation reflection and Individual (patients) deliberation Collective (public) How? Leaflets, websites, Surveys, focus Citizens juries, local media, groups, public deliberative polling, roadshows, meetings, discrete choice noticeboards, complaints, opinion exercises, Delphi newsletters polls methods
  • 11. Information Consultation Participation Flow of information One way One way Two way Agency public Agency public Agency public Purpose Letting people Informing Getting a snapshot Engaging in Opportunities for know and raising asof patient and preferences, well dialogue or information, awareness capturing them; views as public negotiation reflection and participants can, and deliberation Individual (patients) often do, change their views Collective (public) How? Leaflets, websites, Surveys, focus Citizens juries, local media, groups, public deliberative polling, roadshows, meetings, discrete choice noticeboards, complaints, opinion exercises, Delphi newsletters polls methods
  • 12. Information Consultation Participation Flow of information One way One way Two way Agency public Agency public Agency public Purpose Letting people Informing Getting a snapshot Engaging in Opportunities for know and raising asof patient and preferences, well dialogue or information, awareness capturing them; views as public negotiation reflection and participants can, and deliberation Individual (patients) often do, change their views Collective (public) How? More suitable for Leaflets, websites, Surveys, focus Citizens juries, decisions which are public local media, groups, deliberative polling, complex, contested roadshows, meetings, discrete choice and require trade- noticeboards, offs complaints, opinion exercises, Delphi newsletters polls methods
  • 13. Set out with a clear idea about what the public is being asked to do  The ‘right’ method is the one that suits the aims, target group and circumstances  Make use of local networks and expertise  Have a clear rationale for inviting/selecting participants (and for exclusions)  Clarity with participants about other inputs/influences in the decision-making process  Communicate how decisions have been made and where public views have been considered
  • 14. Can do Have the resources and Capacity building, training knowledge to participate and support Like to Have a sense of Building visibility, trust, attachment that reinforces relationships participation Enabled to Provided with the Investing in infrastructures, opportunity for groups and networks participation Asked to Mobilised by official bodies Opportunities that are or voluntary groups appealing, engaging and appropriate; getting the ‘ask’ right Responded to See evidence that their Feedback on how decisions views have been were made and views were considered considered Adapted from Lowndes, Pratchett and Stoker, 2006
  • 15.
  • 16. Take one of the activities identified:  How would you involve patients and the public in this activity?  What factors would enhance (or reduce) the effectiveness of your approach?
  • 17.  Litva, A and colleagues (2002) ‘The public is too subjective: public involvement at different levels of health care decision making’, Social Science and Medicine, 54: 1825-37.  Lowndes V, Pratchett L and Stoker G (2006) ‘Diagnosing and remedying the failing of official participation schemes: The CLEAR framework’, Social Policy & Society, vol 5, 281–291  Rowe, G. and Frewer, L. (2005) ‘A typology of public engagement mechanisms’, Science, Technology and Human Values, vol 30, pp 251-290.  Williams I, Robinson S and Dickinson H (forthcoming) Rationing in Health Care, Bristol: Policy Press