Running a childhood cancer foundation: monitoring and evaluation of programmes
Monitoring and evaluation are often referred to as M&E because they are interdependent. Monitoring flags problems early (e.g., low attendance at support groups) and ensures that families are receiving support constantly. Evaluation tells you whether the support is improving outcomes (emotional wellbeing, treatment adherence, reduced financial stress) or whether the programme should change.
M&E is not just a reporting requirement. It helps your foundation prove impact, improve services, and serve children and families better. For a childhood cancer support organisation, it is especially critical because your programmes directly affect vulnerable lives.
A Customer Relationship Management (CRM) system is a digital platform used to collect, store, and manage information(data) about the people you serve or engage with. CRM helps you track how many families you support and with what services. CRM helps you understand each family’s situation and progress in detail.
When you have a proper M&E system in place, it helps to measure impact without guessing. It is easy to assume programmes are effective, but M&E shows whether your programme and support (emotional, financial, logistical) is making a real difference in children’s and families’ lives.
It also helps you identify what is working and what is not, which allows you to refine and strengthen your programmes over time — for example, which support services are most used, where families are dropping off, or what challenges are not being addressed.
In addition, M&E builds credibility with donors and partners, especially when you can deliver a regular impact report. Funders want evidence of impact, and strong M&E helps you show actual results (not just activities), justify funding, and attract new donors and partnerships.
M&E also ensures transparency and responsible use of resources, since you are accountable to the children and families you serve, to donors and stakeholders, and to your own mission.
Finally, good data helps leadership make informed decisions about expanding programmes, cutting ineffective services, and allocating resources wisely.
How to monitor and evaluate programmes practically
Start by defining your outcomes and deciding what change you want. You do not need a complicated system — start simple and grow. Look beyond the activities and focus on the impact: for example, the programme / activity is to provide transport assistance to and from the treatment centre, the outcome you want to achieve is that children attend treatment regularly, and the impact is improved treatment adherence and health outcomes.
Next, develop clear indicators of what you measure and use a mix of quantitative (numbers) and qualitative (stories, feedback) data, for example the number of people you serve, the number of services you provide to a person, or the number of families receiving psychosocial support. Qualitative data is used alongside quantitative data to interpret trends and understand the drivers of positive and negative performance.
Keep data collection consistent, simple, and practical, and do not overload staff by collecting data that you will not use. You can use intake forms and monitor them against baseline data, follow-up surveys, case worker reports, attendance registers, or feedback from families.
Monitoring also needs to be ongoing. Use your CRM / data collection tools but also verify it against clinical data (health-related information collected during patient care). Do monthly reviews and report to your Board quarterly or as they require, and track your progress against targets to identify issues early.
By contrast, evaluation is a deeper analysis. Do annual programme reviews, compare outcomes over time, and assess overall effectiveness. Ask yourself if the programme achieved its goals, what changed for beneficiaries, and what should be improved.
Use data to adjust programmes, train staff based on your findings, share results with stakeholders, and celebrate successes. Most importantly, tell your impact story. Data will have an impact if it is shared with human stories. Storytelling is powerful for fundraising and awareness.
Tips:
- Keep tools simple and at low-cost.
- Train staff on why M&E matters and not just how to do it.
- Protect confidentiality, patient data and the dignity of children.
- Involve families in feedback.
- Start small and scale gradually.
Practical tool
A log frame / logical frame is used to clearly plan, implement, monitor, and evaluate a programme by linking activities to measurable results and outcomes. When using a log frame, you always start with impact (What we aim to change) and then work back towards basic implementation.
INPUTS What do we use to do the work (HOW) | ACTIVITIES How do we do it? (HOW) - strategies | OUTPUTS What we achieve / deliver – Who we reach (WHAT) | OUTCOMES What we wish to achieve (WHAT) | IMPACT What we aim to change (WHAT) |
What we invest in to achieve the outcomes: - Physical resources (Facilities, equipment, supplies and educational materials) - Human resources: staff and volunteers - Financial resources - Intangible resources: knowledge, skills, access to target population, collaborator, connections with influencers and stakeholders | Conduct workshops and meetings. Deliver services. Develop products / programmes. Train staff and volunteers Provide counselling. Assess Partnerships collaboration Media | Direct results using SMART goals (specific, measurable, achievable, relevant and time bound. | What the short, medium, and long-term results are. Short term: to learn about the problem. Medium term: drive positive behaviour change. Long term: what the ultimate impact is. | The desired future speaks to your vision and mission. |
Funding, staff | Transport, counselling, support groups | # of children supported # of assessments done Amount of funds distributed | Improved adherence to treatment, Support alleviates emotional and financial stress | Better survival and quality of life for children. |
Indicators tell you what success looks like in measurable terms, and means of verification tell you where the evidence will come from to prove that success.
Objectively Verifiable Indicators (OVIs) are the specific, measurable signs that show whether you are achieving your outputs, outcomes, and impact. Anyone looking at the data should come to the same conclusion—it is not based on opinion. Some are quantitative (numbers # or percentages %). Some include a qualitative element (e.g. reported stress) but are still measured in a structured way (e.g. surveys).
Good indicators are specific, measurable, achievable or attainable, relevant and time bound. (SMART GOALS)
- Specific: Provide psychosocial counselling to caregivers of children with cancer.
- Measurable: Support 200 caregivers per year.
- Achievable: Reach caregivers in three regional hospitals within 12 months
- Relevant: Improve psychosocial wellbeing of families affected by childhood cancer
- Time-bound: Provide transport support to 150 families within 12 months.
Means of Verification (MoV) are the sources of data you will use to prove your indicators. You will get the evidence through patient records, attendance registers, surveys or questionnaires, interviews or focus groups, hospital data systems, or case management reports. If your indicator is the “80% of caregivers report reduced stress” – your MoV might be:
pre- and post-support survey tools, counsellor reports, structured interviews, etc.
Results (Outputs, Outcomes, Impact) are the levels of change in your log frame:
- Outputs → What you deliver e.g. number of counselling sessions provided.
- Outcomes → Short- to medium-term changes, e.g. improved caregiver coping skills.
- Impact → Long-term change, e.g. better survival and health and quality of life for children.
Each level must have indicators (how you measure it) and means of verification (how you prove it).
A simple example is:
- Outcome: Caregivers experience reduced stress.
- Indicator: 80% of caregivers report reduced stress after 3 months.
- Means of Verification: Standardised caregiver stress surveys completed pre- and post-intervention.
Read more
General M&E Frameworks and Principles
- United Nations Development Programme (UNDP). 2009. Handbook on Planning, Monitoring and Evaluating for Development Results. New York: United Nations Development Programme. https://files.acquia.undp.org/public/migration/tr/pme-handbook.pdf
- World Bank 2012. Introduction to Monitoring and Evaluation for Results. Provides practical guidance on designing M&E systems and using data for decision-making. https://www.worldbank.org/en/scci/topic/monitoring-evaluation-and-results
- OECD 2010. Quality Standards for Development Evaluation. Defines best practices for accountability, credibility, and learning. https://www.oecd.org/content/dam/oecd/en/publications/reports/2010/02/quality-standards-for-development-evaluation_g1ghc6e7/9789264083905-en.pdf
Nonprofit / NGO-Focused M&E
- DG Murray Trust. n.d. A guide to monitoring and evaluation for NGOs. https://dgmt.co.za/resources/a-guide-to-monitoring-and-evaluation-for-ngos/
- Better Evaluation. Monitoring and Evaluation Resources Library. Offers accessible guidance, methods, and examples for programme evaluation. https://www.betterevaluation.org/sites/default/files/Monitoring%2520and%2520evaluation%2520framework.pdf
- Leanne M. Kelly, et.al. 2022. Developing a monitoring and evaluation framework in a humanitarian non-profit organisation using agile methodology. file:///C:/Users/Admin/Downloads/KellyGoodallLombardi2022MEFrameworkandAgileDPM.pdf
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Why do we need to start a childhood cancer foundation?
Many parents who have been through the childhood cancer journey have a need to give back either to honour their child, to support other families facing the same journey, to address the unmet needs in the health system, to raise awareness about childhood cancer, to raise funds for treatment or supportive care programmes, to provide sense of purpose and healing, to build a supportive community, to advocate for the children’s rights, to fill the gap left by their own experience or the contribute to research and improved outcomes.
