Victorian Integrated Cancer Services

Consumer Forum Report 23 August 2019

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Acknowledgments We wish to acknowledge and thank the consumers and program staff of the six Integrated Cancer Services (listed below) who participated in the planning and coordination of the VICS consumer event:

NEMICS (lead) Graeme DOWN

Anna MASCITTI – Project coordinator

Katherine SIMONS – Committee Chair

BSWRICS Sandra ANDERSON

Angela BURNS

Fred CHATFIELD

Heather CAMERON / Leigh MATHESON

GICS Glenn REEVES

GRICS Kerrie EASTON

Hayley HALL

Michelle PRYCE

SMICS Colleen BERRYMAN

Marie PANDELOGLOU

WCMICS Sylvia YEO

We also acknowledge the support of the Victorian Government, the input of the Department of Health & Human Services, Cancer Strategy & Development unit and all Victorian Integrated Cancer Services for funding & support of this event.

Thanks also to Veronica Strachan from True Dialogue for her facilitation of the event.

Prepared by Anna Mascitti (NEMICS) – 8th November 2019

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Background

The inaugural Victorian Integrated Cancer Services (VICS) consumer forum was held in April 2016.

Consumer attendees at that forum were keen for a repeat forum in two years.

In August 2018, NEMICS consumer reference group (CRG) members advocated for a repeat consumer forum; this was felt to be especially important given the concern members were having at that time relating to the proposed reconfiguration of metropolitan ICS and the possible impact on consumers.

CRG members were keen that part of the overall purpose of a subsequent forum should be to include an opportunity for consumers involved with ICS to:

discuss their concerns/issues/opportunities with the current ICS model & how their interest is sustained/enhanced

and

hear from the DHHS about new developments that may have an impact on consumers & their roles within the ICS

A briefing paper for the ICS managers was prepared by NEMICS staff, with the input of NEMICS consumer members.

It proposed that a repeat forum would enable consumers and ICS project staff to:

share and hear the outcomes generated post the initial forum

discuss concerns/issues/opportunities for consumers with the current ICS model and how their interest is sustained/enhanced

hear from the DHHS about any new developments that may have an impact on consumers and their roles within the ICS over the next three years

generate opportunities for future consumer collaboration projects.

The following outlines the timing of key activities:

February Agreement at the ICS managers meeting on the proposal submitted by NEMICS

March ICS managers and directors endorsed the proposal for a consumer forum, the estimated budget of $8000-$10,000 and that it would be supported from ICS pooled funds

April NEMICS sought expressions of interest from other ICS to assist in planning the forum

June Planning of the forum commenced

Appointment of the session facilitator, Veronica Strachan – True Dialogue

23rd Aug 2019 2nd VICS consumer forum was conducted.

NEMICS assumed responsibility for coordination of the event and led/chaired the forum planning committee meetings, in conjunction with ICS program staff and consumers from BSWRICS, GICS, GRICS, SMICS and WCMICS.

The committee involved five consumers and nine program office staff.

Planning of the forum was undertaken via seven teleconference meetings and an additional face to face meeting between NEMICS involved staff and the session facilitator.

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About the forum

The VICS consumer forum was held on Friday 23rd August at the Victoria University – City Convention Centre in Flinders St Melbourne.

The broad aims of the forum were for consumer attendees to:

network learn share and brainstorm

In total, 48 people attended the forum with representatives from seven of the nine VICS.

The majority of attendees were consumers (30), the rest included ICS program staff (10) and five ICS managers. Spiri Galetakis attended from CS&D (DHHS) and Lidia Horvat and Belinda Macleod-Smith from the Consumers as Partners branch of Safer Care Victoria (SCV).

The majority of consumers in attendance were representatives from the ICS; there was also a small group of consumers from prostate support groups and without formal links to ICS.

The event was facilitated by Veronica Strachan.

Pre-forum survey One month prior to the forum, consumers linked to or with an interest in the ICS, were asked to complete a survey.

The intent of the survey was for the planning committee to be informed of the current issues and needs of consumers who contribute to the work of the ICS and for the findings from the survey to be collated and integrated within the forum.

The survey sought input into five key areas:

Role How consumers have been involved in the work of their ICS & how they feel their role and input makes a difference

Support and training How consumers are supported to undertake their roles and what additional supports could further assist them and what training/information could further assist them in their roles

Communication How the ICS communicates with consumers regarding information/possible opportunities; whether sufficient information is provided and in a timely manner and whether consumers receive sufficient information about projects underway at their ICS/other ICS

Ranking of Partnering in Healthcare framework domains of care Consumers were asked to rank from 1-5 the five domains of the Partnering in Healthcare framework for further discussion at the forum and for possible ICS focus

Future directions Consumers were asked to indicate the one thing that all ICS should be focusing on and the one thing that all cancer patients should have

(Refer attachment 1 - pre-forum survey)

Partnering in Healthcare

framework – domains of care

Personalised and holistic

Working together

Shared decision-making

Equity and inclusion

Effective communication

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Pre-forum survey results

A total of 36 survey responses were received.

The survey results were collated prior to the forum and incorporated into the session, via prompts for group brainstorming sessions and also directed some of the presentation content requested from the Safer Care Victoria speakers.

A3 posters of results from the survey were also displayed at the forum for attendees to view and to acknowledge consumer feedback.

A full summary of the survey results has been distributed to all ICS via forum planning committee program staff or ICS managers.

(Refer attachment 2 - pre-forum survey results)

Key findings:

ROLE

Consumers are involved in multiple ways in their local ICS work, but most contribute via being ‘involved’ or ‘informed’.

Most consumers feel their role and input makes a difference by providing the consumer perspective & voice to the broader health care industry and in improving services for others.

SUPPORT & TRAINING

84% of consumers identified that they are supported to undertake their role by having a key ICS contact person. Some additional supports that consumers highlighted could further assist them in their roles included:

o Feedback – ‘knowing what we’re doing is making a difference’, ‘whether my input is useful and/or how it could be improved’ o Updates on projects I am not directly involved in o Regular updates with consumer reps in the region and outside of region o Flexible ways to contribute that don’t always involve attending meetings; support to assist with negotiating time to attend

meetings with my workplace.

The training/information needs outlined that could further assist consumers in undertaking their roles included: o Training on influencing skills, dealing with push back from clinicians o Exposure to industry based acronyms, wordage & hierarchical structures o More frequent interaction/networking with other ICS o Public speaking/presentation skills

COMMUNICATION

Consumers reported that their ICS mostly communicates with them in writing and email about possible opportunities.

Over 50% of consumer respondents reported sufficient information is ALWAYS provided to them about ICS projects they are involved with and in a timely manner.

Only 35% reported that they are ALWAYS informed about projects underway at their ICS/other ICS; with 15% reporting they are RARELY or NEVER informed. Numerous comments indicated that while consumers reported receiving information about their ICS, they received very little information about projects underway at other ICS.

RANKING OF DOMAINS

Based on the five domains within the SCV Partnering in Healthcare framework, the top two areas prioritised for their potential benefit/impact for ICS and that should be focused on at the forum were:

o Working together o Shared decision making

FUTURE DIRECTIONS

The most common responses to ‘what is the one thing that consumers thought all ICS should be focusing on’ included: o ICS working together o Greater consumer involvement o Communication

Support, communication, consumer decision making and equality, respect and access to care were identified as the things most consumers replied that all people affected by cancer should have.

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Forum agenda The agenda was structured to facilitate the aims of networking, learning, sharing and brainstorming.

Following an initial warm-up activity, the morning included presentations from Spiri Galetakis (DHHS) and Lidia Horvat and Belinda Macleod-Smith (SCV), followed by shorter ICS presentations.

Prior to the forum, all ICS were invited to share projects that had consumer input and impact.

On the day 8 of the 9 ICS were represented. Presentations were provided either by consumers or consumers in conjunction with ICS staff. HumeRICS were unable to attend, but arranged NEMICS staff to present on their behalf.

Meal breaks and table work allowed for networking.

Tables were specifically mixed to facilitate connections between different ICS consumer and staff attendees.

The afternoon group work consisted of brainstorming of ideas and priority setting, with groups to identify 1-2 possible statewide initiatives.

All ICS were asked to share the save the date and agenda details with their respective consumers.

(Refer attachment 3 - session agenda)

Outcomes The broad aims of the forum were for consumer attendees to:

network learn share and brainstorm

Networking There are currently limited opportunities for consumers from different ICS to meet.

The forum allowed consumers to meet and network with others in the breaks and also at their tables. The group work also facilitated opportunities for consumers to meet and hear how other consumers are engaged in cancer service improvement.

Feedback from the session indicated that the networking and interaction with other consumers was one of the more highly rated aspects of what people found most useful/valuable from the event.

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Learning A key aspect of the forum was to support consumer learning.

As part of this aim, speakers from the Cancer Strategy & Development unit (DHHS) and Consumers as Partners branch (SCV) were invited to present.

Consumers involved on the planning committee specified they wanted opportunities to hear and learn but also to share and be heard and as such we allocated equal time for speaking and questions. We also asked the speakers to focus their content on 3 key messages that the planning committee had determined.

These included for DHHS:

Who is who & what do they do? – in relation to the CS&D, SCV, BCV and how do they link to each other, with ICS, hospitals and the broader health sector.

Progress against the current Cancer Plan – what has been achieved? Future directions – what is coming in the next Plan for consumers and how will consumers have a voice

in development of the plan.

And the following topics to be covered by SCV:

The role of the Consumers as Partners division of SCV.

What the Partnering in Healthcare framework means in practice.

What SCV and DHHS are doing in relation to the Working together and Shared decision making domains as selected as the areas of interest by consumers.

Learning opportunities were also facilitated by the ICS presentations and group work discussions.

The results in the feedback survey indicated that ‘to learn/understand what other ICS are doing’ and to ‘share knowledge and skills’ were highly rated as why people attended the forum. And over 90% also felt that both these aims were achieved at the forum.

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Sharing The forum allowed for consumers and ICS staff to share via multiple ways.

A summary of the results from the pre-forum survey were printed onto A3 posters and displayed within the main forum meeting room, which allowed attendees to see the overall results.

ICS were invited to share & promote local resources that could be of benefit to others, via a designated resource table.

There was also the opportunity for all ICS to formally present a project that had consumer engagement and/or impact, via a 5-minute verbal presentation.

Feedback from the session highlighted that the exchange of ideas/hearing about the activities from other ICS was highly valued and useful.

Following the session, a copy of the presentations was shared with all attendees, for whom email addresses were provided.

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Brainstorming

The second half of the forum was dedicated to brainstorming of ideas and priority setting, with groups addressing the following key questions, that had been asked in the pre-forum survey:

What is the one thing that you think all ICS should be focusing on? What is one thing that you think all people affected by cancer should have?

The final task was for each group to identify one to two possible consumer-related statewide initiatives.

What is the one thing that you think all ICS should be focusing on?

Responses to this included:

Better involvement with diverse groups e.g. language & culture More networking between consumers/ICS e.g. newsletter Better links between ICS consumers/health service consumers All ICS share/provide info/projects in one spot - booklet/app/website Provide disease specific communication for all Statewide newsletter 2 times/year Statewide consumer projects – more like this forum My Cancer Care Record for all Equitable access for all tumour streams Interdisciplinary communication Raising awareness about ICS work and information Meaningful consumer involvement from start to finish Define consumer better Spread ICS information more broadly Medistay coverage and end user testing WeCan website - regional coverage

What is one thing that you think all people affected by cancer should have?

Responses to this included:

Care coordination/navigation/volunteers as navigators 1:1 privacy/confidentiality OCP – consumer needs – what’s available locally consistent, quality & affordable care; equity across cancer streams My Cancer Care Record –app, integrated into hospital record, mind shift One shop stop shop for support and information Communication – not rushed Death literacy – advanced care plan

Identify one or two ideas that we could focus on as a state-wide approach

The selected ideas below, were identified by most tables and from group work responses to the two

questions above:

My Cancer Care Record Cancer care coordination

Common themes that all ICS should be focussing on:

* fostering better networking opportunities between consumers

AND

* broader sharing of ICS related work

Priority focus areas for state-wide approach:

My Cancer Care Record & care coordination

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Capture of the event Professional photography and videography of the event was undertaken.

The venue also provided an audio recording of the activities conducted at or near the front stage.

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Results of feedback

Attendees were asked to complete a feedback form on the day.

31 completed surveys were returned.

Most respondents reported that they were happy with: time allocated for speakers and the brainstorming exercises venue and catering their ability to contribute their ideas during the event

Most attendees indicated they wanted a repeat forum and on an annual basis.

43% of respondents indicated ambivalence as to whether they thought any aspects of their consumer work would change as a result of their attendance at the event.

Other additional comments:

‘good to see so many consumer speakers, not just ICS staff ‘

‘great initiative’

‘more energised after hearing more ideas from those who are doing great work’

‘program was well run and organised’

(refer attachment 4 - feedback survey results)

A post forum discussion and debriefing was also held via

teleconference with the planning committee to reflect on

the event.

Committee members felt the event had been very

successful, with great networking and lots of sharing of

ideas and approaches.

The key reasons why people attended the forum were among others, to: Learn/understand what other ICS are doing Share knowledge & skills To contribute to future projects

The things people felt were most useful/valuable were: Networking & interaction with other consumers Hearing about what other ICS are doing Brainstorming & bright ideas group work discussions

Suggestions for how the forum could be improved included:

allow more time for the ICS project presentations, to allow time for questions and interaction post each presentation

reduce guest speakers’ times more notice of the event to get more people to attend clearer guidelines at the start of the session of the desired outcome at the end of the day more guidance during the brainstorming sessions

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Recommendations The VICS consumer forum should be conducted on an annual basis

The planning committee should include at least one consumer and one ICS program office

staff member from each ICS

Planning for such a forum should allow at least 3 months lead in time

Invitations to consumers are extended not only to those actively involved in ICS, but also to those who may benefit from hearing the activities of the VICS, such as cancer support group leaders and consumers linked to health services. For such people not directly associated with an ICS, it is also recommended that prior to their attendance at a forum, they would be provided with a one pager outlining the purpose and function of ICS and, where possible for that to also include a face to face meeting from a member of the local ICS, to assist with their familiarity of commonly used terms & concepts.

A progress report be provided on the how the ICS developed the statewide project at the subsequent forum.

Expenses

Expense item Service provider Amount

Facilitation True Dialogue – Veronica Strachan $3954.55 GST $ 395.45 TOTAL - $4350.00

Venue and catering VU convention centre 50 people

$3000.00 GST $300.00 TOTAL - $3300.00

Photography

Prop & Pose 5 hours

TOTAL - $636

Video recording

Angus Strachan ½ day (4-hour minimum rate) Single highlight video and to include setup/pack down; editing & re-edits of 10-20mins

TOTAL - $800

Overall TOTAL:

$9086

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Attachments 1. Pre-forum survey 2. Pre–forum survey results 3. Session agenda 4. Feedback results