Collaboration with the Association of Cancer Patients in Finland brings patients’ voice to the study of effectiveness of cancer treatments

In studies assessing the effectiveness of pharmacotherapy, patient reported data enriches national register data and produces valuable knowledge of the overall impact of pharmacotherapy. For example, the ongoing national cancer study involves a patient survey to examine the effect of cancer treatments on patients’ daily life and quality of life. According to the initial findings, the impact of treatment on patients’ personal economic situation should not be overlooked when evaluating the cost-effectiveness of pharmacotherapy.

The real world evidence (RWE) studies assessing pharmacotherapy combine national register data with patient reported outcomes, which produces comprehensive information on effectiveness of treatment. Heli Salminen-Mankonen, Head of Data Driven Business and Research Services at Oriola, notes that register studies have traditionally been almost solely based on secondary use of register data, and the patients have had hardly any role in them:

“However, there are many significant aspects affecting treatment success that cannot be discovered using only register data, not to mention findings related to quality of life. For example, a patient’s care may look good based on clinical parameters while the patient himself is actually feeling very ill,” says Salminen-Mankonen.

Better understanding of patients’ experiences through collaboration

Enriching register data with patients’ experiences is at the core of national cancer study, a joint project of Oriola, the Finnish National Institute for Health and Welfare and the Association of Cancer Patients in Finland. The study that started in early 2019 takes a comprehensive look at the costs of cancer treatment and at the effectiveness of the treatment, including effects on patients’ quality of life. The aim of the study is to promote the use of cost-effective cancer treatments and quicker introduction of new and more effective treatments for the patients.

In the study, cancer patients’ experiences are mapped using a patient survey. The respondents have been recruited in close collaboration with the Association of Cancer Patients in Finland.

“Cancer impacts tens of thousands of people in Finland annually, and falling ill usually affects your whole life. Therefore, it is important that in addition to looking at clinical response to the treatment, patients’ experiences of how treatment impacts their daily life and quality of life are taken into account when developing and introducing increasingly individualised treatments,” says Emmi Toivonen, NGO Coordinator at the Association of Cancer Patients in Finland.

According to the initial findings, it looks like the national cancer study will produce scientific information on how cancer affects the patients’ personal economic situation, a phenomenon that has often been overlooked. Additionally, awareness of your situation has a strong impact on quality of life: patients who were unable to say what the situation of their illness was, also experienced weaker quality of life.

Transparent handling of health data increases trust

When gathering health related information from people with serious illnesses, responding to a survey needs to be safe and easy. With the help of Oriola’s digital research platform, surveys can be carried out electronically and transparently according to the principles of fair data economy.

“Allowing the use of your personal health data for research purposes is a great sign of trust from the patients. The digital research platform uses strong identification, and patients can give their consent electronically and control the usage of their own data. Additionally, the research platform uses pseudonymisation, ensuring that the researchers handling the research data cannot link the responses to individuals,” says Salminen-Mankonen.