Table 3 Evaluation of the KNRbS by Swiss Commission Principles on Effective International Research Partnerships

1. Set The Agenda Together

Yes

The Situation Analysis performed at the first meeting with the involvement of the entire group highlighted immediate priorities of the strategy and agenda-setting.

Multidisciplinary group has different viewpoints; although agenda is mutually agreed-upon, there may be conflict in the approach to be used.

2. Interact with Stakeholders

Yes

KNRbS meetings are multidisciplinary and include members from multiple sectors.

Establishing a partnership required time; needed to build trust and delineate mutual benefit.

3. Clarify Responsibilities

Yes

Roles and responsibilities are set at KNRbS meetings in person.

Communication challenges outside of the meeting made it difficult to follow-up with roles & responsibilities of members.

4. Account to Beneficiaries

Yes

Survivors & retinoblastoma families are part of the KNRbS group. They serve as moral ‘compass’ to keep KNRbS on track to achieve targets for the benefit of patients, and provide lived experience to influence health service delivery.

Multidisciplinary collaboration is difficult, particularly between lay people and science/medical teams.

5. Promote Mutual Learning

Yes

Multiple workshops and learning opportunities have been offered.

Fellowship funding is limited, yet fellowships provide most intensive form of training.

Invited speakers that bring different perspectives to the group; promotes cross-talk between people with differing areas of expertise.

6. Enhance Capacities

Yes

Progress made in training, access to equipment, and developing research capacities.

Different stakeholders had differing expectations for the focus of capacity building, which required a need to clarify priorities.

7. Share Data and Networks

Yes

An interconnected Kenyan referral system for patients has been established.

Case studies from collaborating centers discussed at KNRbS meetings

Skills & resources are not always evenly distributed during early capacity building initiatives. For example, most patients are treated in Nairobi, whereas child life initiatives have been developed in Eldoret.

Informal communication between participants has strengthened relationships and resulted in research collaborations.

8. Disseminate Results

Yes

Results have been disseminated via publications, conferences, and awareness materials and media.

Participation at international meetings difficult due to limited funding.

Consensus guidelines have been produced and made available to all Kenyan professionals, and online.

9. Pool profits and merits

Yes

Many grant applications were successfully funded.

Few funding sources are available in Kenya.

Research is increasingly conducted by Kenyan investigators and trainees.

Under-developed infrastructure for receiving grants in Kenya keeps group dependent on foreign partners.

There is a transparent system of authorship on publications.

10. Apply Results

Yes - ongoing

Health service delivery innovations are being pilot tested.

Funding limited to support these initiatives; need to consider innovative approaches to ensuring sustainability of efforts.

An assessment of barriers to successful implementation performed; facilitators of implementation identified.

11. Secure Outcomes

Yes - ongoing

Partnership with civil society and government is intended to secure the sustainability of the gains in retinoblastoma outcomes.

Establishing partnerships required time; needed to build trust and delineate mutual benefit.

Endorsement of KNRbS guidelines by Kenyan Ministry of Health validates recommendations.

Progress undermined by changes in political stability, university and public hospital strikes, etc.

Securing outcomes for retinoblastoma requires showing relevance of KNRbS approach to other childhood cancers.