Optimizing Patient Information Material for a New Psycho-Oncological Care Program Using a Participatory Health Research Approach in Germany

Abstract

High-quality patient information material (PIM) is essential for patients´ informed decision-making, and its quality may influence a care program’s acceptance. In the new psycho-oncological care program, isPO, the initial PIM was developed top-down and required optimization. In this paper, we report on the process and experiences of optimizing PIM’s quality bottom-up by applying a Participatory Health Research (PHR) approach. Cancer-patient representatives of the national peer-support group contributed as co-researchers as part of the optimization team. A mixed-methods design was chosen. First, the quality of the initially utilized PIM was assessed with the newly designed user-friendly instrument UPIM-Check. Next, three Participatory Action Research loops were conducted, including cancers survivors and isPO service providers. The initial isPO PIM’s were assed to be of low quality, limited usability and incomplete. Bottom-up generated optimization suggestions led to the improvement of two initially used PIMs (leaflet, patient information folder) and the design of two new PIMs (poster, study information overview). The optimized PIM facilitates isPO service providers’ care provision and helps newly diagnosed cancer patients in understanding and accepting the new program. PIM optimization benefited from applying PHR. The patient representatives’ contribution and active patient engagement were central for quality assessment and designing needs-driven, mature and complete PIM.

Designing a Patient-Friendly Website for Newly Diagnosed Cancer Patients with the Participatory Health Research Approach

“…Further, we promote PHR training for professionals that are aiming to work with peer support groups in order to have the necessary skills and experience with this approach. This includes not only the knowledge of using different instruments, but also the skills to share power, manage conflict, or take on new roles [ 24 , 50 ].…”

“…The previously optimised PIM [ 24 ] were assessed using the document analysis method. They were chosen as starting material for the data collection, as they were already optimised using the PHR approach, and its informative value and wording was approved to be patient-friendly [ 12 ].…”

“…Hence, the optimisation of the isPO PIM was needed, and as such was conducted between October 2019–February 2020. It resulted in four high-quality PIM, namely, a poster, leaflet, patient folder, and one-pager, that were introduced in practice in 03/2020 [ 12 , 24 ]. The PHR approach [ 25 ] was applied for the PIM optimisation process, whereby three groups contributed as co-researchers: end-users (former cancer patients), health professionals, and service providers.…”

“…As a patient-friendly website was identified as the missing element to complete the isPO PIM strategy, we decided to design it with the PHR approach, as this was successfully used during the PIM optimisation process [ 24 ]. In this paper, we will describe (1) how the patient-friendly website for isPO was developed and (2) how the final version of this website was evaluated by its end-users (new cancer patients).…”

“…The following supporting information can be downloaded at: , Table S1: The UPIM-Check checklist [ 1 , 8 , 9 , 10 , 24 , 52 ]; Table S2: The main topics of the revision of the optimization loops; Figure S1: the first working version of the website.…”