Background and Context:
The Danish Cancer Society offers professional multidisciplinary psychosocial support through 15 counselling centers and a nationwide telephone and online helpline. The counsellors have up to 90.000 contacts a year and a unique insight in to the everyday life of people affected by cancer.
Gathering information on the unique experiences of patients and relatives provides the organisation with a powerful instrument to assess and influence the performance of the healthcare system. We sat out to create simple and ongoing systematic data collection of our users’ experiences with cancer care.
In addition to the obligatory registration of demographic data, the counsellors were invited to add information whenever they met a user experience relevant for the organisation’s policy and media activities. The informants were asked for their consent and contact information in case of the need for follow-up questions.
The method is inductive as the quality issues are determined by the patient and relatives, and is neither expensive nor time-consuming. Once a week new data are evaluated by a small workgroup and if necessary the data are distributed almost instantaneously to relevant internal parties. Twice a year a report describing and discussing the main issues is produced.
Outcomes/What was learned:
Patient stories can be used to vividly communicate the complexity of experiences across sector boundaries and through the whole patient pathway. Albeit the information gathered is neither representative nor generalisable it gives the organisation an immediate insight into important issues concerning people affected by cancer, and in the long run shows trends and flaws in regard to cancer care. These experiences give The Danish Cancer Society an efficient tool for dialogue with local as well as national health care providers and authorities about quality improvement.