Engagement
A total of 43 stakeholders working directly within cancer control, and other key leaders or actors ancillary or adjacent to cancer control within the health or government sector were identified and contacted. Of these, 35 were available and interested in taking part in a consultation to discuss a South Pacific Regional Coalition, and all were happy to participate in the research evaluation of the framework. Table 3 summarises the key characteristics of stakeholders interviewed. Role title and organisation name are not reported to preserve participant confidentiality.
Table 3: Summary of stakeholder demographic characteristics
Stakeholder Demographic Category
|
n
|
%
|
Role
|
|
|
Public Health Professional
|
11
|
31
|
Clinician
|
9
|
26
|
Policymaker
|
6
|
17
|
Project/Technical Officer
|
5
|
14
|
Epidemiologist
|
2
|
6
|
Consumer Advocate
|
1
|
3
|
Academic
|
1
|
3
|
Organisation type
|
|
|
CSO/NGO
|
11
|
31
|
Ministry/Department of Health
|
9
|
26
|
Development Partner
|
6
|
17
|
Public Tertiary Health Service
|
4
|
11
|
Private Tertiary Health Service
|
3
|
9
|
Private Primary Care Health Service
|
1
|
3
|
Academic Organisation
|
1
|
3
|
Country Focus
|
|
|
Fiji
|
15
|
43
|
Regional
|
8
|
23
|
Tonga
|
5
|
14
|
Samoa
|
4
|
11
|
New Caledonia
|
2
|
6
|
Papua New Guinea
|
1
|
3
|
The majority of the stakeholder consultations (n = 29, 83%) were conducted face-to-face in country; the remainder were conducted via telephone or videoconference (n = 6, 17%). Consultations ran for an average of forty-two minutes (SD = 20mins), generating a total of twenty-three hours of data. Of the eight stakeholders identified but not consulted: three were on leave for the duration of the project, three did not respond to emails, one did not have time-capacity (though was supportive of the project), and one was cancelled due illness and was unable to be rescheduled.
Discovery, unification and action
Analysis of the consultations identified the following six coalition development outputs:
- Coalition design and purpose
- Strategic imperatives
- Structure
- South Pacific foundations
- Barriers and facilitators to coalition establishment and ongoing operations
- Priorities for action
Diagrams were developed to summarise and describe each stakeholder output, with a composite of all outputs diagrams presented in Figure 2. A comprehensive situational analysis was completed and will be reported elsewhere. Development of the finalised coalition model will also be reported elsewhere. .
Output 1: Coalition Design and Purpose
All thirty-five stakeholders supported the development of a South Pacific Cancer Control Coalition. Stakeholders suggested the first step in the development of the Coalition should be the establishment of a central hub or secretariat, such as a regional Cancer Agency. This would reduce the burden of administration, management, or potential perceived ‘ownership’ from any one country.
“When we seek to meet, we should all know what we're working towards. We should all have the same vision, the same mission.” Participant 14
Eliminate Cancer or a Cancer-Free Pacific were suggested vision statement, however other stakeholders preferred a more results-oriented and achievable purpose statement, such as: Effective Cancer Control (see figure 2). Values specified by stakeholders included: Transparency, Accountability, Respect and Integrity. Stakeholders also emphasised that the Coalition must be outcomes focused, and result in tangible and measurable benefits for the people and communities suffering from cancer. The Coalition would consist of all interested South Pacific organisations currently working in cancer control and be open to new members over time. For organisations to become part of the Coalition, their mission and values would need to be aligned with those of the Coalition.
Output 2: Strategic Imperatives
Stakeholders agreed that the Coalition will need to have a clear mandate, purpose, and objectives. These will be essential to ensure that the Coalition is effective and not passive or tokenistic. The following strategic imperatives articulate both key objectives, and what individuals and organisations would expect from membership (see Figure 2).
1. Partnerships
Facilitate community and regional networks, and foster partnerships between individuals and organisations.
2. Data-driven to respond to South Pacific needs
Respond to issues identified through data collected by members in region-specific clinical settings and by cancer registries.
3. Cancer-specific, long term and sustainable change
Increase the visibility of cancer in the South Pacific. An established coalition to assist CSOs leverage long-term and comprehensive health system change.
4. Advocacy and Empowerment
Provide a powerful, unified, and respected voice to the political arena to bring cancer to the forefront of discussions; and empower national agencies in advocating in the international setting.
“This Coalition can be a source of empowerment to the national agencies on cancer prevention, cancer treatment diagnosis, cancer medicine” Participant 4
5. Sharing and Capacity-building
Enable accurate information about cancer care organisations, technical expertise, facilities, and healthcare workforce to be effectively shared and communicated throughout the region.
A regional approach to cancer control would increase regional capacity, knowledge, and resources.
6. Strengthen, complement, streamline
Enable a strategic approach to all activities from education, awareness, and outreach, through to screening, treatment, and palliative care. All current activities would be strengthened and streamlined through partnerships and coordination.
Output 3: Structure and Membership
Stakeholders agreed that Coalition membership would be open to all South Pacific island states and all cancer and health-focused organisations, departments or services interested in participation (figure 2). Most stakeholders felt that the Coalition should be CSO-driven. It was recommended that the Coalition work in tandem with governments and clinical services, but noted that CSOs have the potential to act independently, call government actors to account, and can potentially overcome or bypass political or diplomatic issues between countries.
“It will need to be a strong body that ministries or governments are answerable to” Participant 32
1. Representative of all working in cancer control
The Coalition should be representative of each country, and all cancer control activities within the region. The following groups are important for invitation and inclusion:
- Ministries/departments of health
- CSOs and NGOs
- Clinical Services and Health Professionals
- Academics
- Consumer advocates
- Traditional Medicine Providers
- Church and other social groups
2. Partnering with Governments
For the Coalition to be viable, it would need to work hand in hand with governments and receive endorsement from governments and Heads of Health at a national and regional level.
3. Supported by Development Partners
International development partners within the region (such as WHO, SPC or UNICEF) were considered essential for impact and regional cohesion. It was also felt that these organisations would be well placed to provide valuable support for the Coalition in the form of technical and practical assistance.
Theme 4. Maintaining South Pacific Ownership
1. Run by and within the South Pacific
To enable the region to grow and develop, stakeholders strongly felt that Pacific peoples need to be given ownership and leadership positions within the Coalition. Stakeholders emphasised that South Pacific island culture, cancer burden and politics are best understood and navigated by local people.
2. Maintain Independence
Stakeholders agreed that the Coalition should maintain independence and sit outside the governmental and clinical arenas. Impartiality and distance were seen as essential in order to effectively set policies, evaluate activities, and work in partnership with governments, health professionals and health services.
“My observations and my working with different programs or projects have found that there's always a lot of emphasis on bringing external consultants. But I feel to work as a program, it needs to sit with a country; and discover how the country can develop their own capability.” Participant 12
3. Strong Leadership
A steering committee to drive leadership and governance was suggested, comprising representatives from cancer organisations and health services. A pre-defined time-period for serving on the committee would ensure that people were willing to take on this role, and to nurture innovation and change.
4. Dedicated paid staff
Given current capacity constraints faced by all individuals working in cancer in the South Pacific, stakeholders emphasised the need for full-time, paid local staff able to focus solely on the Coalition. However, voluntary assistance and technical support in the development and running of the coalition were recommended as an opportunity to grow South Pacific capacity without jeopardising ownership.
Output Five: Barriers and facilitators to coalition establishment and ongoing operations
Potential barriers and threats to coalition development and activities were outlined by stakeholders to highlight the challenges which need to be thoughtfully considered, discussed, and addressed. Equally, existing and potential future facilitators were also described, so that development of the coalition can leverage or harness these opportunities where possible and appropriate (see Table 4).
“The big challenge with any kind of any network or coalition, whether within country or across countries is keeping it going. Everybody's fired up at the beginning, but nobody has time to do because everybody's very busy. And nobody's willing to put the time into doing it. And so gradually, it fades away.” Participant 16
Table 4: Comparison of barriers and facilitators
Facilitators
|
Barriers
|
Health system design and cancer burden
Health systems, cancer burden, risk factors and technical capacity in the region are similar, forming strong facilitators for regional activity and transferrable learnings.
|
Lack of adequate data
Paucity of health and cancer-related data in all countries is a significant barrier to Coalition establishment and development of targeted cancer control activities.
|
Established multi-national programs and goals
Existing international indicators, goals and programs can be leveraged by the Coalition to facilitate governmental support, international funding, partnerships, and national accountability.
|
Lack of dedicated CSOs or government teams
No governments in the South Pacific have dedicated cancer teams. Many nations do not have dedicated cancer CSOs. This will be challenging for the Coalition to navigate relationships with governments, and maintain cancer-specific activity.
|
Established relationships, interest and capacity
Existing partnerships between CSOs, Ministries of Health and public and private healthcare services can be developed and strengthened with the introduction of a Coalition.
|
Politics
Existing political alliances or issues between nations and regions require the coalition maintain neutrality. Concerns regarding inter-organisational politics and agendas are also present.
|
Embracing technology
Use of technology can be employed by the Coalition to overcome geographical and travel limitations, support health professional networks, telehealth, capacity development; and communication with international partner organisations.
|
Sustainability, funding and travel
Funding is scarce and existing CSOs and governments are wary of new competitors. Travel can be prohibitively expensive in the Pacific, and logistically difficult as many countries do not have direct transit routes.
|
Output 6. Priorities for Action
Experts agreed that priority areas for the coalition must hit a balance between what is meaningful for patients and healthcare professionals, but achievable for NGOs/CSOs or health services and systems. The following priorities were identified as being essential for concurrent health system strengthening across the cancer control continuum:
- Develop Standardised Systems for Quality Data: Stakeholders agreed that a priority is to establish high quality methods to facilitate data collection, monitoring and evaluation, storage, sharing and research at national and regional levels.
- Strengthen Prevention and Early Detection: It was unanimously agreed that the Coalition should work to capitalise on momentum and build on current progress in implementation of evidence-based interventions in cancer prevention, and screening for early detection in areas of need, such as cervical cancer.
- Development of Cancer Control Plans and Policy: development of national and regional cancer control strategy and reviewing and improving current cancer control laws and policies in member states.
- Implementation of Palliative Care Strategy: Stakeholders articulated the dearth of palliative care services currently available and prioritised the development of regional and national palliative care policies and implementation strategies.
- Improve Overseas Treatment Referral Pathways: Facilitate equitable, affordable, sustainable and appropriate access to cancer treatment within the Pacific (e.g. in New Caledonia, Australia and New Zealand).
- Pooled Procurement of Anti-Cancer Drugs: Investigate the potential for a regional approach for the procurement and management of anti-cancer drugs.
Framework Evaluation
Logic model mapping determined that the proposed framework inputs and activities comprising situational analysis, stakeholder consultations, information synthesis and consensus building resulted in the anticipated outputs and outcomes (see figure 3). As stakeholder ideas for Coalition strategy, structure and purpose began to take shape, these were then discussed as part of the ongoing consultation process. New information and perspectives were iteratively incorporated until concrete ideas were finalised, and consensus reached.
Importantly essential considerations regarding use of the framework were identified through this evaluation process. Specifically, diversity of stakeholders and key actors within civil society, the private sector and the state was needed to optimise contextual understanding, and to determine priorities which ensure a whole-of-system approach. Each stakeholder grouping carried unique perspectives and situational understanding which would have been missed if diversity in stakeholders was not purposively sought. Likewise identification of key actors and power-brokers was important, especially to inform targeted engagement where appropriate. In some nations, hierarchy and ceremony are necessary contextual elements to understand and adhere to, particularly as some stakeholders will find it inappropriate to engage unless formal, culturally-specific processes are followed. Identification and engagement with diverse stakeholders and key actors also ensured that the proposed governance and organisational design is inclusive of all interested stakeholders; and accounts for managing or leveraging commercial interest and/or competing priorities.
Early conversations with key stakeholders regarding leadership and ownership were also important. For many people, understanding that the FCS were the key drivers for this work, and that Pacific leadership and ownership was planned and valued, facilitated their engagement and support. Further, as information regarding proposed coalition structure, purpose and design became clear, mechanisms for action were likewise able to be articulated, as leadership and ownership had been to some degree decided upon.
Other key findings highlighted that concurrent mapping of key barriers and facilitators ensured that activities are relevant, achievable and measurable, and so issues could be discussed with relevant actors to ensure importation into both organisation design and identification of priorities for action. Finally, including discussion regarding establishment and implementation of monitoring and evaluation frameworks also meant that these key elements were included as essential elements of coalition design rather than as an afterthought.