Why strengthen use of real-world data?

It is a strategic ambition for DCCC to strengthen use of real-world data (RWD).

First, to uncover the barriers to data infrastructure which can support clinical research and make it possible to conduct participatory research to systematically follow-up on different treatment modalities.

Second, to ensure better understanding and use of routine data from the entire cancer pathway (screening-symptoms-referral-diagnosis-treatment-late effects-rehabilitation-palliation) across sectors.

 

Method and process

The analytical and advisory work was organised in three tracks along the patient pathway:

  1. When cancer is suspected to focus on supporting the tacit knowledge from general practice following the patient into hospital,
  2. At diagnosis and during treatment where it is possible to know and where we would like to know if new treatments will work equally well in real patients and
  3. after treatment, where we must be able to follow rehabilitation, late effects and palliative efforts and to support targeted and individual follow-up.

During 2023, three workshops were conducted where relevant professionals across sectors, disease areas and professions were gathered. Across the three workshops, participants generally agreed on which type of knowledge and which data are decisive in the transition between sectors. Among professionals in general practice and hospitals there is a recognized need for a clearer cross-sectoral collaboration; structured knowledge-sharing is a key element in this. A common overview of the patient’s course of disease across sectors was requested, because this is necessary to have relevant professional discussions across sectors.  Such an overview would save time and improve common decision-making for the providers responsible for the patient’s treatment.

Moreover, it was clear that we already have a considerable amount of data which could be used more optimally in research and in daily professional communication about patients. It very much about ensuring synergies between the clinical need for data, the need for knowledge across sectors and to provide researchers with the possibility to

  • Support good collaboration between providers and patients
  • Support research in the part of the pathway that crosses sectors
  • Enable monitoring of quality and follow-up across sectors.