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?

Patients and the public

Strategic planning

Priority setting decisions

Implementation phase

Monitoring and evaluation

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 Agency public

One way Agency public

Two way Agency public

Purpose Letting people know and raising awareness

Getting a snapshot of patient and public views

Engaging in dialogue or 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 Agency public

One way Agency public

Two way Agency public

Purpose Letting people know and raising awareness

Getting a snapshot of patient and public views

Engaging in dialogue or negotiation

Individual (patients)

Collective (public)

How? Leaflets, websites, local media, roadshows, noticeboards, newsletters

Surveys, focus groups, public meetings, complaints, opinion polls

Citizens juries, deliberative polling, discrete choice exercises, Delphi methods

Information Consultation Participation

Flow of information One way Agency public

One way Agency public

Two way Agency public

Purpose Letting people know and raising awareness

Getting a snapshot of patient and public views

Engaging in dialogue or negotiation

Individual (patients)

Collective (public)

How? Leaflets, websites, local media, roadshows, noticeboards, newsletters

Surveys, focus groups, public meetings, complaints, opinion polls

Citizens juries, deliberative polling, discrete choice exercises, Delphi methods

Opportunities for information,

reflection and deliberation

Information Consultation Participation

Flow of information One way Agency public

One way Agency public

Two way Agency public

Purpose Letting people know and raising awareness

Getting a snapshot of patient and public views

Engaging in dialogue or negotiation

Individual (patients)

Collective (public)

How? Leaflets, websites, local media, roadshows, noticeboards, newsletters

Surveys, focus groups, public meetings, complaints, opinion polls

Citizens juries, deliberative polling, discrete choice exercises, Delphi methods

Opportunities for information,

reflection and deliberation

Informing preferences, as well as capturing them;

participants can, and often do, change

their views

Information Consultation Participation

Flow of information One way Agency public

One way Agency public

Two way Agency public

Purpose Letting people know and raising awareness

Getting a snapshot of patient and public views

Engaging in dialogue or negotiation

Individual (patients)

Collective (public)

How? Leaflets, websites, local media, roadshows, noticeboards, newsletters

Surveys, focus groups, public meetings, complaints, opinion polls

Citizens juries, deliberative polling, discrete choice exercises, Delphi methods

More suitable for decisions which are complex, contested and require trade-

offs

Informing preferences, as well as capturing them;

participants can, and often do, change

their views

Opportunities for information,

reflection and deliberation

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 knowledge to participate

Capacity building, training and support

Like to Have a sense of attachment that reinforces participation

Building visibility, trust, relationships

Enabled to Provided with the opportunity for participation

Investing in infrastructures, groups and networks

Asked to Mobilised by official bodies or voluntary groups

Opportunities that are appealing, engaging and appropriate; getting the ‘ask’ right

Responded to See evidence that their views have been considered

Feedback on how decisions were made and views were 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