In cancer treatment, a few months or weeks can mean the difference between life and death, and primary care physicians don’t receive enough training to identify cancer early. Moreover, there are no records on how long cancer diagnosis is taking; this data is crucial to inform health policy. How then, can patient-generated data be gathered to create evidence for change?
Directorio Legislativo is an organisation working for legislative transparency in Argentina by monitoring work in congressional sessions, tracking legislative spending of public resources, and promoting the articulation across public and private sectors.
They wanted to find a solution for cancer patient organisations and promote understanding around how citizen-generated data could help in advocacy in the country. They collaborated with Wingu, one of our local technology and advocacy partners in Argentina.
Cancer patient associations lack necessary evidence to approach health decision-makers. They know from anecdotally that the diagnosis of cancer in primary health clinics in Argentina takes longer than it does in other contexts, but they needed specific timelines from a national sample.
They decided to use the power of cancer patient associations’ outreach to collect the data themselves, but they had no infrastructure or survey methodology that could be reused in this effort and had to start from scratch.
We first created a survey aimed at determining how long cancer patients took to be diagnosed. A web platform was then developed to implement it and outreach among allied cancer patient organisations was conducted to further gather responses.
Directorio Legislativo are using survey feedback, responses, and their own realisations to improve each of the components and continuing scaling the project.
They’ve identified challenges to address as they scale the project; such as gathering more data from outside Buenos Aires for a national representation, as they intend making the survey more accessible and approachable, and reducing questions while maximising precision.
Directorio Legislativo and the cancer patient associations now have a better understanding of the potential impact of citizen-generated data and incorporating it into their advocacy.
Our work together has poised Directorio Legislativo to further improve patients’ quality of life by strengthening interactions between patients, public health constituents, and decision-makers and improving primary care facilities ability to care for patients.