By Ria Earp Chief Executive Building a Sustainable Healthcare System The role of the Patient Voice Symposium By Ria Earp Chief Executive

Focus for the presentation: ‘Patient Voice’ – who are we talking about? ‘Patient Voice’ – processes & why it is so hard – understanding the ‘other voices’ ‘Patient Voice’ – voice of family, whanau, carers? ‘Patient Voice’ – voice of community, voice of Māori, other ethnicities?

What will not be covered ….. Is the ‘patient voice’ important? Does the ‘patient voice’ contribute to the discussion?

Patient Voice – who are we talking about ? Identifying clients, consumers/users, patients…. - using a ‘segmentation’ approach; are there natural sub-groupings (e.g. age, locality, ethnicity, illness, gender) that may have differing views on the service? - using different approaches to ensure patient views are expressed? (e.g. focus groups, co-planning design, advisory groups, surveys, highlighting opportunities to give feedback & complaints, understanding the patient journeys)

Patient Voice – processes: advisory groups Clarity around the expectations for the ‘consumer representative’ Expectations examples; – using ‘one person’ as the patient voice on ‘expert committee’ - high risk of failure – i.e. digesting ‘wads’ of information; understanding ‘status issues’; training as a form of mitigation (e.g. Cancer Voices’); single person isolation

Patient Voice – processes: advisory groups Examples continued; – Māori DHB Board members (2 members); included in legislation; seeking nominations; appointed versus elected; training & networks – training days held over 2 days x 3 a year; briefings on legislation, strategies; health systems, understanding DHB accounts; networking with local communities & with each other

Patient Voice – processes: surveys & research Using tested tools & peer reviewed methodologies Other approaches (eg audits; survey monkey) Understanding the limitations of different approaches; – evidenced based research methodologies (quantitative and qualitative); funding; long time frames – rapid approach – potential to fall into ‘question trap’; possibly not seen as credible; audits give good indications but may be subjected to bias

Patient Voice – why is it so hard? Organisational or system inertia Health systems and a layered approach using ‘expertise’ to make the recommendations & decisions Needs to fit with the political environment Information asymmetry Easy for the patient voice to be ‘drowned out’

Patient Voice – other voices? Systems and strategies Funder (contracts or donors or fees) Professionals – clinical, organisation staff, volunteers, health partners Patients, clients, consumers, turoro (advance care planning) Caregivers, family or whanau, EPOA, NOK Communities (ethnic, locality, ‘sector’, interest)

Mary Potter Hospice- what we use Value base – patient and family focus Use range of approaches (targeted advisory groups, research, regular patient/family survey, audits, widely available ‘You talk, We Listen’ pamphlets, posters, written/web based information; adhoc service consultation, pilot testing approachs) Clarity about when we are giving information & when we are consulting or seeking views & what we are seeking views on Managing complaints- policies & processes

Kia ora koutou