2.2. Research Process

The research process was divided into seven steps: (1) initiation, (2) the planning and document analysis, (3) the first exploration through interviews, (4) the creation of a first version of the website, (5) three optimisation loops and, finally, (6) plausibility check and (7) dissemination (Figure 2).

The research process of the website design.

Participatory action research (PAR) was conducted in step 5 during the three optimisation loops, containing Act, Analyse, Adapt, and Implement [33].

In the following, each research step will be explained:

Step 1—Initiation

In addition to the four previously designed analogue PIM, the missing fifth element—a patient-friendly website—was desired for isPO. Its development process was initiated in March 2020 (Figure 2, left side), and the first contacts with possible peer support organisations were established. The first participation level (instrumentalization) was reached by reading and talking about our target population (Figure 1).

Step 2—Research process planning and document analysis

Our planning included: (1) the installation and setup of the WordPress programme [34], (2) setting the administrative conditions for the research steps, and (3) exploring recruitment strategies for PAR participants (e.g., former cancer patients).

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].

Step 3—Initial exploration through interviews

To obtain a first impression of patients’ actual needs and requirements for an isPO programme website, four interviews have been conducted (isPO-Oncoguides n = 3; isPO-Case Manager n = 1) (see Table 1). The isPO-Oncoguides are specially trained to support patients with information communication within isPO. These participants were invited through a personal letter. The fourth interview partner, an isPO-Case manager, was invited and recruited via a direct working contact within the isPO programme. Due to the COVID-19 pandemic, telephone interviews were conducted. In this third step, we reached participation level four (cooperation) with the end-users (Figure 1).

Step 4—Creation of an initial website working version

Based on the condensed knowledge from the document analysis (step 2) and the interviews (step 3), the first version of the patient-friendly website was designed. This process was guided by the criteria of Krug and Dubau [35] that were linked to the merging elements of the interview analyses. Because in this step the website was technically designed by the primary researcher, no active engagement with the target group was performed.

Step 5—Creation, optimisation, and finalisation

Our website creation process contains three PAR optimisation loops (Figure 2, middle side). Firstly, data were generated through interviews or focus groups (Act) and assessed (Analyse). Next, the structure and content of the website were improved (Adapt). Finally, optimisations were transferred on the website (Implement). After completing each loop, the current status of the website was critically reflected within the isPO evaluation team in a systematic manner, using a critical-friendly approach [32] to assure its content correctness.

Step 5.1 Loop 1

In this loop, one focus group with three experts from the KG-NRW and two interviews with members of the House of Cancer Self-Help (HKSH) were conducted. The recruitment of the focus group participants was conducted via direct contact by e-mail. Besides the experts of the KG-NRW, one expert from the IMVR evaluation team also participated in the focus group as a critical friend. Due to the COVID-19 pandemic, interviews were held via Zoom video calls.

A complete PAR loop was conducted. Therefore, in both data collection rounds (focus group and interviews), the screen was split to show the first version of the website to the participants (Act). Next, the website was critically discussed by the participants (Analyse). Third, optimisation suggestions were realised (Adapt) (e.g., structural, textual, or graphical shortcomings). Finally, the results of the analysis were technically incorporated (Implement) into the, at that point, existing version of the website. During our interactive focus group discussion, participation level five (co-creative learning) and during the interviews, participation level four (cooperation) was achieved (Figure 1).

Step 5.2 Loop 2

In loop two, the recruitment of the three interviewees of the District Association of Larynx Operated People Aachen e.V. was conducted by telephone in combination with a personal information letter sent via e-mail. Two of the three interviews were conducted face to face. Interview three was held via telephone. The website was critically observed and reflected upon together with the primary researcher as it was shown on a screen during the two face-to-face interviews, and the PAR steps Act and Analyse were the same as in loop one. For the telephone interview, the participant received a website link in advance and visited it before the interview. The participant’s statements were, thus, only based on his memory, as he was viewing and analysing the website before the interview. The PAR steps Adapt and Implement were similar to loop one. We reached the fourth level of participation (cooperation) by engaging the cancer peer groups in the process (Figure 1).

Step 5.3 Loop 3

The third and final optimisation loop included a focus group (PAR Act and Analyse). No active recruitment of participants for the focus group was necessary, as it was interlinked with another internal project event of isPO. Seven isPO-Oncoguides participated. Two experts from the IMVR evaluation team stimulated the conversation with questions (critical friend approach). Textual optimisation was realised in parallel to the focus group, and technical issues were solved afterwards (PAR Adapt and Implement). During this final interactive focus group discussion, participation level five (co-creative learning) was achieved (Figure 1).

Step 6—Plausibility check

Subsequently, facilitated by the HKSH-BV support, several members from different peer groups and the participants of the focus group were invited via e-mail to conduct the plausibility check of the new website. For this purpose, the website was open for evaluation for a total of six days. The assessment instrument UPIM-Check was sent to the participants for this purpose, and it included four quality criteria: Q1 correctness and validity of the content (9 items), Q2 readability of content (8 items), Q3 structural readability (4 items), and Q4 graphical readability (10 items) [12]. A comprehensive overview of the UPIM-Check’s quality criteria can be found at https://www.imvr.de/wp-content/uploads/UPIM-Check_English.pdf (accessed on 24 January 2022) [36].

Due to the poor response rate, further members of the HKSH-BV were contacted with a personalised cover letter, and the call for completing was prolonged for another 12 days. The checkboxes of the completed UPIM-Checks were evaluated with the help of descriptive statistics using SPSS. This enabled the researcher to gain an overview of the evaluation. In addition, the information in the open text fields was qualitatively assessed (thematic analysis) [37]. Since the practical opinion of the end-users was requested, participation level three (consultation) was achieved (Figure 1).

Step 7—Dissemination

The final, mature version of the patient-friendly website was presented to the isPO project management within a video telephone and split-screen session lasting for two hours (13.11.2020) (Figure 2, right side). Afterwards, the product was submitted to the Joint Federal Committee (G-BA) in the Public Relations and Communication department (funder of isPO) to obtain permission for incorporating the G-BA logo. It was approved for publication by the German Aerospace Centre (DLR) and the G-BA (11.01.2021). Finally, all four isPO care networks interconnected their websites with the newly designed patient-friendly website. During this last step of publishing the website, participation level two (compliance) was achieved (Figure 1).