Developing a tool to facilitate person-centered care in a university hospital in collaboration with patients and healthcare professionals

Abstract

Background

Person-centered care (PCC) aims to treat patients as full persons and provide care that fits patients’ contexts, needs, and wishes. This healthcare approach views patients as active partners, emphasizing patient engagement. PCC is increasingly recognized as a factor in improving healthcare and patient health outcomes, yet, structurally putting PCC into practice in the clinical encounter remains challenging. Cocreation improves usability, feasibility and uptake of tools for intended users. We developed a tool in cocreation with patients and healthcare professionals to support PCC in clinical encounters.

Methods

The development consisted of three phases. Firstly, existing evidence was elicited via two scoping reviews. Secondly, we cocreated a prototype PCC tool with patients and healthcare professionals based on meetings and interviews. Thirdly, we conducted tryouts with the prototype of the PCC tool in the rehabilitation, neuro-oncology, and pediatric departments of a university hospital to test its potential for facilitating PCC and suitability for larger-scale implementation and for a wide variety of patients. The tryouts were evaluated via interviews with patients and healthcare professionals, which we analyzed using thematic analysis. A content analysis of the information filled out in the prototype of the PCC tool was conducted.

Results

Cocreation with stakeholders resulted in the development of the PCC tool comprising a digital five-item questionnaire, called ‘We would like to know you’, to support PCC in a hospital setting. Patients fill out the questionnaire voluntarily in the patient portal before the consultation. Health care professionals (HCP) read the answers in the Electronic Health Record (EHR) and touch upon the questionnaire during the clinical encounter to initiate a partnership. For patients, the questionnaire turned out to be useful to share their preferences, needs and expectations. For HCP the information shared in this questionnaire appeared to provide a good starting point to provide PCC.

Conclusion

The collaboration with patients and HCP throughout the entire process resulted in a tool that suits users and fits into daily practice in a hospital setting. The three step approach of Hawkins et al. provides a practical way to develop and test a tool to support PCC in clinical encounters.

Supplementary information

The online version contains supplementary material available at 10.1186/s12913-026-14179-w.

Background

Person-centered care (PCC) aims to treat patients as full persons and provide care that is responsive to an individual’s personal circumstances, values, needs and preferences. The foundational idea of PCC is that the morally right way to treat patients is to acknowledge them as full persons without reducing them to aspects of their being, such as their disease; considering key life domains, such as social life and work, as well as patients’ needs and wishes regarding care [1, 2]. Ekman et al. [3] stated that delivering PCC starts by initiating a partnership between the patient and the health care professional (HCP). Initiating a partnership starts with asking the right questions about what matters to the patient as a person [4].

The HCP learns about the patient’s narrative, the person’s own account of their illness, symptoms, and the impact on their life. Patients are placed at the center of healthcare, recognizing them as capable partners, and are actively involved in decision-making processes to ensure that communication and treatments align with their unique needs and preferences [3, 5].

Whilst many support the idea of PCC, and many interventions have been reported aiming to promote it [6–9], implementation throughout different healthcare teams and settings remains a challenge. Some successful interventions for implementing PCC so far are found in palliative care, such as advanced care planning (ACP) and the patient dignity question (PDQ). ACP is an approach focused on end-of-life care planning and has proven to positively impact the quality of care delivered [10]. The PDQ asks patients “What do I need to know about you as a person to take the best care of you that I can?”. It has shown to make improvements to a person-centred environment and levels of empathy perceived by patients [11]. Barriers in facilitating PCC are related to time constraints of HCPs, difficulties in behavioral change, and challenges in establishing organizational changes needed for adaptation of PCC tools [12–15].

An important approach to overcome implementation difficulties is collaboration with stakeholders throughout the development process. Through cocreation, a method for the joined approach and active involvement of stakeholders throughout different phases of the design and evaluation, stakeholder perspectives are incorporated in the design to ensure usability and feasibility for the intended user [16–18].

This article describes the cocreation of a PCC tool that enables patients and HCP to initiate a partnership while overcoming the barriers mentioned above. If the goal of health care is to help a patient reach individual goals which are adapted to the situation of that person, one cannot deliver health care without partnership, id est, without having both parties collaborate to achieve that goal by contributing their respective knowledge and experience. Health as ability to adjust, also known as positive health [19], was a concept that we wanted to see applied in our care delivery and thus in the tool to be developed.

Methods

We developed a tool (a digital questionnaire with 5 open ended questions, called ‘We would like to know you’ (WWLTKY)) to support PCC in clinical encounters, in cocreation with patients and HCP. Tables 4 and 5 present the final version five-item questionnaire; Table 6 provides a description of the PCC tool using the TIDieR checklist. In the methods and result section, we refer to the WWLTKY questionnaire using different terms to reflect the development stage: a) pre-development phase: a PCC tool, b) during piloting (phase 2 and 3): the prototype PCC tool ‘We would like to know you’; c) the final product: the PCC tool ‘We would like to know you’.

Table 4.

Questions of the adult version of ‘We would like to know you’

Questions	Text under information buttons
Q1 What are important activities, now or in the future?	You can think of work, hobbies, or other ways you like to spend your time (traveling, sports, family and friends).
Q2 Which people are important in your life, and why are they important?	You can think of your partner, children, family, neighbors, friends, or people from your community, health care center, city, or other organizations.
Q3 What are you worried about concerning your health?	You can think of symptoms, fatigue, fear of pain, or concerns about specific things you might not be able to do in the future. We advise you to always discuss important medical information with your healthcare professional during the conversation.
Q4 What do you think is important that your healthcare professionals know about you?	You can think of everything in relation to your care or treatment, like: do you want your doctor to address you with sir/madam or do you prefer an informal way of communication? Do you want your doctor to show pictures to explain something? Do you always want to bring a certain person to the consultation? We advise you to always discuss important medical information with your healthcare professional during the conversation.
Q5 What do you expect from your treatment at the {large academic hospital}?	You can think of the results of your treatment, a regular contact person that you can always call or ask a question via e-consultations, or anything else.

Table 5.

Questions of the pediatric version of ‘We would like to know you!’

Questions	Information buttons
Q1 Who are important people in your life and why?	Who is very important to you? (think also of your pet or stuffed animal) Who always goes with you to the hospital? And why? Who do you like to go to for a hug or to tell something?
Q2 What would you like to do every day?	What do like to do during the day? What activities make you happy? Do you have dreams about what you want to do or become later?
Q3 What do you think about a lot when it comes to your health?	Sometimes children (occasionally) think a lot about their health or about being sick. Do you ever have that? What do you think about then?
Q4 What should your doctor* know about you?	What is the most important thing that we should know about you in the hospital? Are there things we need to know to take good care of you? *doctors, nurses, physiotherapists, etc.
Q5 What do you expect when you come to our hospital?	Can you tell us why you are coming to the hospital? What do you think that will happen? What do you hope for regarding the visit*? *visit, stay, examination, treatment, surgery

Table 6.

Description of the PCC tool ‘We would like to know you’, using the TIDieR checklist [39]

Item	Description	Phase of process
1 Name	We would like to know you	Phase 2
2 Why Rationale, theory, and goal	This intervention follows a Person-centered approach The importance of patient engagement is increasingly recognized as a factor for improving health care. The model of healthcare provision based on patient engagement and involvement is called person-centered care (PCC). PCC aims to involve the context, needs, values, and wishes of patients in the clinical encounter to provide high-quality care. Structurally embedding PCC in daily healthcare is a challenge. There is a need to develop an approach together with stakeholders to facilitate PCC in the daily healthcare setting. PCC can be stimulated by initiating a partnership between patients and HCPs. The narrative of the patient is central. Steps in working the relationship and safeguarding the relationship can be established after this.	Literature about PCC [sources!} Phase 1 scoping reviews
3 What materials, access to materials	Adult patients: A digital questionnaire that consists of 5 questions and additional information texts per question (see Table 5). Pediatric patients or their caretaker: A digital questionnaire for pediatric care consisting of 5 questions and additional information texts per question (See Table 6). Health care professionals: HCPs receive instructions with a PowerPoint presentation and a written document with a description of the background, aim, and a description of how to access patients’ answers in the electronic health record. Also, they receive suggestions on how to discuss the topics of the questionnaire during the consultation.	Phases 1, 2, and 3
4 What Procedures	1. Each new patient of the participating health care department receives an invitation to fill out the questionnaire voluntarily via their personal patient portal five days before their first appointment in the hospital, or at the time of admission. 2. A reminder is sent to patients to fill out the questionnaire voluntarily before the hospital appointment. 3. The department makes agreements in which HCPs address the questionnaire, for example, the treating physician, nurse, nurse practitioner, or educational worker. 4. This HCP checks whether the patient has filled out the questionnaire in the electronic health record. 5. If the patient has filled out the questionnaire, the HCP reads the answers during the usual preparation for patient care. 6. The HCP indicates to the patients that they have read the answers. 7. The HCP assesses if the patient wants to discuss the topics of the questionnaire. 8. The HCP is instructed to take relevant information provided via the questionnaire into consideration for the conversation and the provision of care in general.	Phases 2 and 3
5 Who provided Expertise of the provider	HCPs with patient contact receive information on how to access the questionnaire and receive suggestions on how to refer to the questionnaire during patient care.	Phases 2 and 3
6 How	Patients fill out the questionnaire via their individual Patient Portal. They can ask their proxies to help. HCPs can access the questionnaire via the electronic health record of the hospital (HiX by ChipSoft). The content of the questionnaire is visible on the main page of the digital health record. Discussion of the content happens during regular consultations, face-to-face.	Phases 2 and 3
7 Where	The PCC approach was developed in a Dutch university hospital and try-outs were conducted in the rehabilitation clinic, neuro-oncology department, and pediatric care. The PCC approach uses the readily available infrastructure of the digital Patient Portal, electronic health records, and regular hospital appointments. The electronic health care system automatically invites new patients with an appointment in the outpatient clinic of the involved healthcare department.
8 When and how much	The intervention is used during the first appointment or another moment in patient care by the main treating physician or another agreed-upon HCP. The patient can fill out the questionnaire again but does not receive a new invitation for this. There are no specific instructions for HCPs to refer to the questionnaire again further in the treatment process	Phase 2, 3
9 Tailoring	Tailoring between adult and pediatric care was done by adjusting the language of the adult questionnaire to language appropriate for children with stakeholders. Individual tailoring of the needs, goals, and wishes of each patient needs to be taken into account by the HCP. Therefore, HCPs can flexibly use the PCC approach in everyday practice.	Phase 3
10 Modifications	The location of the PCC approach in the electronic healthcare record (HiX by ChipSoft) was changed to a more visible location so it was easier to find for healthcare professionals.	Phase 3
11 How well (planned)	The Program Patient Participation of the hospital reaches out to the involved departments and addresses questions or remarks. They also provide information about the PCC approach and are a contact point for the departments. Fidelity is assessed by regularly measuring the percentage of patients that fill out the questionnaire.	MRC guideline [source]
12 How well (actual)	Not applicable

The development of a tool that targets ‘a number of groups, settings, or levels’ and ‘permits a level of flexibility in the delivery of the intervention’ can be considered a complex intervention according to the Medical Research Council (MRC) [20]. The MRC guidance offers a framework to guide the development and evaluation of complex interventions. The revised version stresses the importance of early engagement with stakeholders. Yet, in line with other studies developing complex interventions [21–23], we turned to Hawkins et al.’s framework for the cocreation process which comprises the following stages: 1) Evidence review and stakeholder consultation, 2) co-production, and 3) prototyping [24].

This resulted in the following steps for our development process: 1) evidence review, 2) co-production of a prototype of the PCC tool involving patients and healthcare professionals, 3) tryouts with the prototype of the PCC tool in different departments of the academic hospital. This was an iterative process which allowed for revisions of early versions of the prototype throughout this study. The development took place between June 2019 and April 2023 and is outlined in Fig. 1, illustrating the sequences of data collection, analysis and interpretation in each of the phases, informing each subsequent stage.

Fig. 1.

Overview of the three phases of development of the PCC tool ‘We would like to know you’

An overview of the methods and results relevant to the development of the PCC tool are presented in this paper. In our reporting (methods and results), we have followed PRISMA and COREQ guidelines as much as possible (within the constraints of the format and length of a scientific paper) with information split between text and tables to improve readability. Readers who wish for additional information about certain steps in the process can contact the corresponding author.

Setting

The PCC tool ‘We would like to know you’ was developed in a large Dutch academic hospital. This hospital focused on improving and embedding collaboration with patients to improve care for several years [25, 26]. The aim was to create a generally applicable tool, suitable for diverse healthcare situations and for a wide variety of patients. Three departments, representing diverse settings, were chosen for the prototyping and tryout phase for the PCC tool: the rehabilitation department, the neuro-oncology department, and the pediatric hospital.

The outpatient rehabilitation clinic focuses on rehabilitation for patients with different medical diagnoses, such as patients after a cerebrovascular event, patients with a neuromuscular disorder, oncological patients, and trauma patients. Most patients were referred to this clinic via other specialists. HCPs working at the clinic are rehabilitation fellows, residents, specialized nurses, occupational therapists, physiotherapists, and psychologists. Patients visit this clinic for outpatient consultation and outpatient rehabilitation therapy.

The neuro-oncology department specializes in oncological diagnostics and treatment of the central nervous system, such as primary brain tumors, secondary brain tumors, and meningiomas. The tryout focused on the outpatient clinic.

The pediatric hospital is a tertiary department for specialized care for patients under 18 years. It focuses on a variety of care, such as developmental diseases, perinatal care, circulatory health, and infectious or immunity diseases. The prototype PCC tool was introduced to all newly admitted patients in the inpatient and outpatient clinic under the age of 18 years.

All parts of this study were exempt from ethics approval from the REC according to Dutch law. Informed Consent was obtained from all participants.

Phase 1: Evidence reviews

In the first phase, two scoping reviews were conducted to identify interventions and/or tools aimed to improve PCC in care. Table 1 provides an overview of the activities and main findings of Phase 1; supplementary file 1 includes the search string for both evidence reviews.

Table 1.

Overview of activities of phase 1: Evidence reviews

Activity	Objective	Methods	Who involved	Main findings
Phase 1: Evidence review
Scoping review PCC interventions and/or tools in healthcare June 2019	Identification of different types of PCC interventions and/or tools	Scoping review Inclusion criteria: articles written in English or Dutch, primary research article (both qualitative and quantitative), intervention/tool focused on improving person-centeredness in the clinical encounter between any health professional and patient/client/resident. Exclusion criteria: review articles, background articles, and research reporting on interventions/tools with no goal to affect the clinical encounter, interventions only suitable for very specific patient populations, requiring significant time investment of HCPs, or requiring hiring of extra personnel.	Researcher (LdK)	10021 titles were screened based on title and abstract. 77 papers were included. The categorization showed many studies using a questionnaire, a narrative/life story, or a conversation guide as PCC intervention/tool.
Scoping review PCC interventions and/or tools for healthcare professionals April 2020	Elucidating PCC interventions and/or tools that focus on the involvement of healthcare professionals	Scoping review Inclusion criteria: publications, both qualitative and quantitative research, describing a PCC intervention/tool targeting HCPs that were applicable in the clinical setting. Exclusion criteria: reviews, no full text available, background articles, interventions/tools only for medical students, interventions/tools with no goal to have an effect on the clinical encounter, interventions/tools for advance care planning, end-of-life support or do-not-resuscitate orders, interventions/tools only suitable for very specific patient populations, decision aids as only intervention/tools, research involving incapacitated participants.	Researcher (JB)	1,457 articles were screened based on title and abstract. Articles (n = 46) were screened on full text. Of them, 5 articles met the criteria of a maximum duration of a 5-minute PCC intervention/tool per patient.

The first scoping review was conducted in June 2019 as part of a master’s thesis (unpublished work, L.A. de Keizer). This review aimed to identify papers reporting on an intervention to improve PCC in healthcare. For the inclusion and exclusion criteria, see Table 1. The identified interventions were extracted and analyzed focusing on different characteristics: (1) the type of intervention, (2) how the intervention was used, (3) the moment the intervention was used, and (4) the goal of the intervention.

A second systematic search was performed in April 2020 as part of a bachelor’s thesis (unpublished work, J.H.K. Bergers). It aimed to identify interventions and tools specifically focused on HCPs and how they could engage with PCC. See Table 1 for the inclusion and exclusion criteria. PCC interventions for HCPs were extracted and analyzed based on the following characteristics: (1) the type of intervention, and (2) an estimation of the time needed to apply the intervention.

For both reviews, subcategories of each characteristic were defined during a reiterative process of full-text screening. The main findings relevant for the development of the PCC tool are reported in the result section. All relevant tools are described in the results phase 1. This information was used in the next phase of the development process.

Phase 2: Cocreating a prototype of the PCC tool with stakeholders

Phase 2, which ran from (October) 2019 until (April) 2020, was an iterative development process involving brainstorm sessions and interviews with stakeholders to cocreate the format, content and a guideline for use of the PCC tool. Brainstorm sessions were chosen as a method to exchange perspectives, facilitate discussion and generate ideas. HCP, patients, health care management and IT workers participated in different configurations. The information gathered in the literature reviews was used to initiate discussion and engender ideas (see: Creating initial ideas); for example, the identified relevant characteristics of PCC tools were used to inform the topics for the brainstorm sessions and topic guide for the interviews, and the identified tools were presented at brainstorm sessions with the research group, and also with a patient panel. Afterwards, we conducted in-depth interviews with HCP and patients from the rehabilitation department (see: Qualitative interview study 1). The interviews were set out to obtain insight into what patients and HCP consider essential aspects of the PCC tool. Lastly, in collaboration with a patient panel and the IT department a protype of the PCC tool was created using the input from the brainstorm sessions and interviews (see: Development of a prototype of the PCC tool). Table 2 provides details of the methods and main results of phase 2.

Table 2.

Overview of activities of phase 2: cocreating a prototype with stakeholders

Activity	Objective	Methods	Who involved	Main findings
Hackathon ‘Dutch Hacking Health’ October 2019	Brainstorm sessions and ‘out of the box’ thinking to come up with ideas to improve PCC in healthcare	Group discussions, workshops in smaller groups	Patients, HCPs, health intervention designers, software engineers, entrepreneurs (n = approximately 150 participants)	The shaping of a personal patient profile, including personal photos and questions about the personal life and health care. An example of health-related questions eliciting patients’ needs and wishes (figure 2)
Patient network meeting (first) October 2019	Reflecting on initial ideas for the tool	Online group discussion	Patients, members of the hospital client council, hospital employees, students (n = approximately 30)	Shaping ideas for content on a patient profile, such as formulating questions Text on ‘patient profile’ must be easy to read. Working with the PCC tool should be quick because only then is it feasible for healthcare professionals.
Research group meeting November 2019	Drafting initial prototypes of the tool	Research meeting	Researchers (n = 4)	Creation of a preliminary prototype of the PCC tool based on the hackathon and patient network meeting input.
Interviews with patients and HPCs of the rehabilitation clinic November 2019 through January 2020	Understand patients’ and HCPs’ needs, wishes, and preferences regarding what is important personal information to share for PCC Identify the preferred format Identify potential barriers and facilitators	Semi-structured interviews Inclusion criteria: HCP with direct patient contact (outpatient clinic consultation, or inward patient contact). Patients visiting the outpatient clinic with at least one visit to the clinic with at least one consultation with an HCP, minimum 18 years old, intact ability to speak. Exclusion: none for HCPs. Patients who could not speak Dutch or English, inability to hold a 30-minute interview. Data analysis: analysis of transcripts using thematic analysis.	Patients (n = 10) HCPs; doctors, nurses, allied health professionals (AHPs) (n = 11)	Recommendations for the PCC tool: (1) up-to-date, (2) not too much information, (3) access to information, (4) easy to use, (5) accessibility for different types of patient groups, (6) not mandatory. Almost all respondents considered a questionnaire a good way to share and obtain information. Visual information such as photographs was met with mixed feelings
Research meeting February 2020	Shaping the PCC tool	Research group discussions	Researchers (n = 3)	Five questions based on important subjects brought up in the hackathon and interview study with patients and HPCs of the rehabilitation clinic were identified, Additional information per question to help patients to fill out the questions. Giving a name of the PCC tool: ‘We would like to know you’.
IT department meetings February and March 2020	Formatting the PCC tool in the electronic health record and solving technical issues	Meetings	Supportive hospital staff (3 researchers, 2 employees (1 health record specialist, and 1 user experience designer)	Adjustments in the electronic health care records to make the tool available for the right patient group
Patient network meeting (second) February 2020	Reflecting on the patient profile and questions	Meeting	Patients, members of the hospital client council, hospital employees, students (n = approximately 30)	Attendants considered the PCC tool, a five-question digital questionnaire, as a promising approach for facilitating PCC. Attendants identified essential elements for a good implementation: HCPs’ education and clarifying the rationale of the PCC approach.

Creating initial ideas (brainstorm sessions)

The evidence obtained through the reviews about PCC interventions was used as input for the discussions with stakeholders to define and develop the key characteristics of the future PCC tool: 1) the approach of the PCC tool, 2) the specific goal of the tool and its place in the current hospital practice; 3) point of time in the care process to use the tool, and 4) users and usage of the tool. Discussions were conducted at different locations and with different stakeholders. Table 2 contains a description of each meeting. Sharing the findings of the reviews elicited participants to share knowledge on PCC tools that had not been identified in the reviews, for example the “What matters” tool, a webpage that guides a patient through four questions, trying to identify what matters to them, to aid their healthcare [27]. These brainstorm sessions resulted in the creation of the first prototype PCC tool named “a patient profile” (see: hackathon, in Table 2).

Qualitative interview study 1

An interview study was conducted at the rehabilitation clinic. A convenience sample of HCPs and patients was selected from the rehabilitation department. Dutch or English-speaking HCPs with direct patient contact, and patients visiting the outpatient rehabilitation clinic were eligible. HCPs received an email with information about and invitation to sign up for the study, and they were also approached at clinic meetings. Patients from the outpatient clinic were eligible when having attended at least one visit to the clinic consisting of minimum one consultation with a HCP, minimum 18 years old, and intact ability to speak. Patients from a patient panel (sound board group) were recruited via email; patients from a rehabilitation group therapy were approached in person.

The participants were selected with attention for variability in gender (both groups), disease (patients), and profession (HCPs) to see if more people needed to be approached to ensure a representative sample of the rehabilitation clinic. The number of included participants was operationalized during data collection using an iterative approach: interviews with HCPs and patients were conducted and analysed concurrently. First a batch of seven interviews were conducted, followed by one-by-one iterative diversity sampling – separately for HCPs and patients - and coding. Saturation was determined by code saturation [28], defined as the point when no additional issues are identified and the codebook begins to stabilize. Interviews were in person at the hospital, or another location proposed by the participant. A few interviews were conducted via telephone (in line with national COVID guidelines). At the beginning of the interview, a detailed description of the purpose of the study and the use of the data was given to the participant.

Data collection

Semi-structured interviews were conducted between November 2019 and January 2020 by LdK. In interviews which lasted 20 to 75 minutes the following topics were covered: 1) How do stakeholders look at sharing of information on a patient’s key life domains?, 2) What information would patients want to share?, 3) How would HCP want information about a patient’s key life domains to be shared?, and 4) How could this information be put into a functional tool?. Two examples of PCC tool, identified during previous steps of phase 2, were introduced during the interview to foster discussion, (see Tables 1 and 2). The first tool was “a patient profile” (See: Creating initial ideas, and Fig. 2). The second tool was the “What matters” tool [27]. All interviews were recorded with a digital audio recorder.

Fig. 2.

The patient profile PCC tool prototype created during hackathon

Thematic analysis

Interviews were analyzed using thematic analysis [28]. The interviews were transcribed verbatim by the interviewer (LdK). After transcription, the interviews were read thoroughly to gain a fuller understanding of the general opinions of all participants. An initial coding tree was developed using deductive codes based on four research questions: (1) How do stakeholders look at sharing of information on a patient’s key life domains?, (2) What information would patients want to share?, (3) How would HCPs want information about a patient’s key life domains to be shared?, and (4) How could this information be put into a functional tool?. All interviews were coded in NVivo 12 using the deductively built coding tree. Inductive codes were identified during coding and added to the coding tree. To check the quality and validity of coding, a second researcher (JB) coded one patient interview and one HCP interview. Differences in coding and interpretation of codes between the researchers were discussed; a final coding tree was decided between the two researchers (LdK & JB).

The codes were analyzed by one researcher to extrapolate the diversity of opinions of participants per topic (LdK). Connections between codes were discussed with a second researcher (JvD).

Development of the WWLTKY prototype

With the information gathered from the first two steps, the prototype of the PCC tool (a digital questionnaire with 5 open ended questions) was created during meetings with the core research team (JvD, HWW, LdK). The prototype was presented at a patient network meeting, and feedback was used to adjust the prototype. Several meetings with the IT department took place to align the prototype with the existing hospital IT-systems, such as the electronic health record (EHR) (a digital repository that collects, organizes, and stores patient data, aiming for interoperability and secure exchange of health information), and the online patient portal (a domain in an EHR that allows patients to access their records or communicate with their healthcare providers [29]. Linguistic specialists screened the prototype to ensure the language was consistent with B1 level Dutch (Council of Europe, 2018).

Phase 3: Piloting the prototype of the PCC tool

The prototype of the PCC tool was introduced and made available to stakeholders in three hospital wards: rehabilitation, neuro-oncology, and pediatrics. This selection was a combination of a purposeful choice for three different test sites (adult and children, acute and chronic conditions) and pragmatic choice opting for a coalition of the willing [30] (looking for a collective goodwill and shared determination to work towards PCC in the hospital). A PR campaign was undertaken to inform all parties of the existence of the tool via emails, posters and information sessions. Tryouts in these three different healthcare settings were conducted, see Table 3.

Table 3.

Overview of activities of phase 3: Piloting the prototype of the PCC tool

Activity	Objective	Methods	Who involved	Main findings
Rehabilitation department: assessment of local feasibility	Assess the acceptability and feasibility of the PCC tool in the clinical context of the rehabilitation outpatient clinic	Department field visit by researcher, researcher and HCPs meetings	HCPs (n = 6); doctors, nurses, AHPs. Research team	Agreement on the local procedure using the PCC tool (a five-question digital questionnaire).
Rehabilitation department: tryout and interviews July 2020 – April 2021	Identification of experiences and value for healthcare, focus points for further development of the PCC tool	Semi-structured interviews were conducted, data analysis was on the level of researcher summary	HCPs (n = 14): physicians, psychologists, an occupational therapist, a physiotherapist, a speech therapist, and a social worker	The vast majority of the respondents thought the PCC tool was useful.
Neuro-oncology department: assessment of local feasibility	Assess the acceptability and feasibility of the PCC tool in the clinical context of the neuro-oncology outpatient clinic	Department field visit, researcher and HCPs meetings	HCPs (n = 14): doctors/surgeons, nurse practitioners, AHPs Researchers (n = 2)	Agreement on local procedures using the PCC tool: identification of newly admitted glioma patients, and agreement using the PCC tool during patients’ treatment processes.
Neuro-oncology department: patient group meeting	Gather opinions on the the preferred format for a PCC tool	Group discussion	Patients (n = 7) HCPs (n = 2) researcher (n = 1)	The five-item questionnaire with extra information texts was thought to be appropriate and useable for neuro-oncology patients.
Neuro-oncology department: tryout and interviews December 2020 – April 2021	Identification of experiences and value for healthcare, focus points for further development of the PCC tool	Semi-structured interviews were conducted, sample size advised by senior qualitative researcher, taking into account time and resources, transcripts were analyzed using thematic analysis [31]	Patients (n = 7) and HCPs: nurse practitioners (n = 3) and physicians (n = 3)	The vast majority of the respondents thought that the PCC tool was a valuable addition to care, Almost all patients and HCPs thought the PCC tool was relevant for care and helped them to prepare for consultations.
Neuro-oncology department: content analysis of completed WWLTKY questionnaires [32]	Assessment of acceptability and obtaining an impression of the feasibility of the PCC tool in this context	Qualitative content analysis [33] Data: patients’ responses to the 5-questions of the digital WWLTKY questionnaire completed between December 2020 and August 2021	Patients (n = 42 patients’ written answers to the five questions of the WWLTKY in the patient portal)	The questions appeared to be mostly easily interpretable for patients. The content was personal and provided information about social activities, sports, maintaining a normal life, fear of the disease, the future, care and communication preferences, and treatment expectations.
Pediatrics: assessment of local feasibility December 2021	Assess the acceptability and feasibility of the PCC tool in the clinical context of the pediatric inpatient and outpatient clinic	Researcher department field visit, researcher and HCPs meetings	HCPs (n = 15); doctors, nurses, department heads, pedagogical workers, desks and staff employees	Agreement on local procedures using the PCC tool: Adaptation for pediatric care is necessary; language adjustments. Agreements on practical arrangements for the tool: inpatient and outpatient clinic procedures.
Pediatric department: child-parent council meeting	Adaptation of the PCC tool to the pediatric healthcare context	Group discussion, filling out the questionnaire individually, and providing feedback	Pediatric patients (n = 2) Parents (n = 2) Researchers	No further adjustments were considered necessary.
Pediatric department: tryout and interviews September 2022 – November 2022	Identification of experiences and value for healthcare, focus points for further development of the PCC intervention	Semi-structured interviews were conducted, transcripts were analyzed using thematic analysis	HCPs (n = 11); doctors, nurses, AHPs	HCPs felt like the implementation of the PCC tool in the pediatric department was still in an early phase. The majority of the respondents thought the questionnaire was practical in use and provided additional information.
Pediatric department: content analysis of completed WWLTKY questionnaires	Assessment of acceptability and obtaining an impression of the feasibility of the PCC tool in this context	Qualitative, retrospective content analysis Data consisted of questionnaires filled out between December 2020 and August 2021	Pediatric patients and/or caretakers (n = 196 patients’ written answers)	Out of 1031 patients, 245 answered to this invitation and 196 filled in the questionnaire. Patients’ answers were mostly easily interpretable. The content was personal and provided information about fears the patients encountered, their character traits, or communication styles participants favored.
Development of the final version of the PCC tool	Incorporation of findings from try-outs in different healthcare settings	Research meetings	Researchers	Placement of the intervention on the front page of the electronic health record Information for the HCPs whether the patient filled out the questionnaire and at what time. Adaptation of information text accompanying the five questions.

Adjustment for healthcare settings and implementation

Different meetings with different stakeholders from the selected departments were carried out to ensure the prototype of the PCC tool fit into the daily practice of each separate department, see Table 3. The research team visited the different departments to gain insight into the clinical setting. In several meetings, local procedures were shaped and agreed upon through discussion.

Implementation of the prototype of the PCC tool was carried out for each department in the EHR and the patient portal. For the rehabilitation department, all newly admitted patients were given access to the PCC tool starting in June 2020. In the neuro-oncology department, which consists of both an outpatient and an inpatient clinic, only outpatients got access, starting in November 2020. For the pediatrics department, the five questions of the prototype of the PCC tool and the accompanying information text were adjusted to make the questions appropriate for pediatric patients or caretakers. Several meetings with pediatric care professionals, parents, and pediatric patients of the hospital’s child-parent council resulted in easier, child-friendly language and switching the order of the first two questions, see Table 3. All newly admitted in- and outpatients were given access to the PCC tool from August 2022 onwards. The filling out of the PCC tool was done by the parents or caretakers of patients at an age below 12, together with patients’ parents or caretakers between the ages of 12–16, and the PCC tool was individually provided to patients above the age of 16. If parents had different opinions on the answers filled in by their children, they could also answer the questions and mark their answers with ‘parent perspective’.

Qualitative interview studies 2–4

A second series of interviews was conducted to understand the experiences of HCPs and patients with the prototype of the PCC tool in different healthcare settings (HWW, LdK, JB). Data collection in the rehabilitation clinic (qualitative interview study 2) was conducted between July 2020 and April 2021, in the neuro-oncology department (qualitative interview study 3) between December 2020 and April 2021, and in the period from September 2022 to November 2022 in the pediatric department (qualitative interview study 4).

HCPs and patients of the rehabilitation, neuro-oncology, and pediatric departments were eligible for an interview if they had experience in using prototype of the PCC tool. Participants were recruited for an interview through staff meetings and via email. They were eligible when they were exposed to the PCC tool, spoke Dutch or English, were 18 years or older, and had an intact ability to speak. The exclusion criterion was the inability to take part in a 30–45 minute interview.

Data collection and thematic analysis

Individual interviews were held in person, via video call, or telephone (during the Covid-19 pandemic), varying between 15 and 60 minutes. Topics addressed during the interviews were (1) use of the prototype of the PCC tool, (2) impact of the PCC tool on the interaction and conversation with the patient and the HCP, and (3) opinions and recommendations of the interviewee regarding the PCC tool. Interviews were analyzed using thematic analysis. The analysis followed the same steps as described above for interview study 1.

Content analysis of patients’ written responses in the prototype of the PCC tool

Two separate content analyses were performed to understand whether answers elicited via the prototype PCC tool were usable and feasible in the tested healthcare setting, being the neuro-oncology and pediatric department. The data consisted of patients’ answers to the questions of the prototype PCC tool in the patient portal; the text was extracted anonymously. In the neuro-oncology department, patients’ answers submitted in the period between December 2020 and August 2021 were included. In the pediatric department, data was collected between March 2022 and May 2022. At each department, a random sample was created, consisting of every other questionnaire completed. The data was analyzed by question of the prototype PCC tool, using deductive predefined high-end codes based on the questions. Inductive codes were added using topics patients addressed. This allowed us to assess the usefulness and interpretability of the questions.

The content analysis of the neuro-oncology department is detailed elsewhere [32]. The content analysis of the pediatric department was part of an unpublished master’s thesis (unpublished observations, JJM van Delden). See Table 3 for more detailed information.

Results

Phase 1: Evidence reviews

The first scoping review search resulted in a total of 10,021 records screened on title and abstract of which 149 articles were screened on full-text and 77 articles met the inclusion criteria (See additional file A, table A2).

The most cited goal of the PCC intervention was to address the patient’s current health issues (42%). The largest group of interventions consisted of questionnaires (36%), followed by narrative and life stories (28%). Interventions were carried out either written (36%) or via a conversation between HCP and patient (49%), mostly during (57%) or before a clinical encounter (43%).

The second scoping review search resulted in 1457 articles screened on title and abstract. Ninety articles were selected for full-text screening, of which 45 met the inclusion criteria. One article was added via snowballing (see additional file A, table A4). Most interventions were an education/training form (n = 14), multidisciplinary and multifaceted interventions (n = 15) and multiple independent interventions, followed by narrative and life stories (n = 8). The five studies whose intervention required 5 minutes or less were further analyzed: three were conversation guides [34–36], one was a digital intervention [37], and one reported using multiple independent interventions [38].

The results of both reviews allowed us to identify and narrow down characteristics of importance (and examples of that) which we needed to explore with stakeholders to choose those apt for our future PCC tool: format (questionnaires, narratives & life stories, conversation guides), when to use a PCC tool in the healthcare process, and time investment.

Creating initial ideas

Figure 2 shows the first protype PCC tool patient profile that resulted from the cocreation meetings. For the specific goals and outcomes of each separate meeting see Table 2.

Qualitative interview study 1

Qualitative interview study 1 was carried out at the rehabilitation clinic and included 21 individuals: 10 patients and 11 HCPs.

The analysis showed that all participants believed sharing information about the patient’s personal life to be important for care. As one patient put it: “[sharing of lifeworld information] went totally wrong for me in my opinion. And that has had significant consequences (…) I only got help when I got very stuck in my life after 10 years (…) if that [informing on patient’s life] had happened right away (…) my life would have looked completely differently” (PT1). Participants differed in their beliefs on how detailed the information about the patient’s life should be. Patients felt differing levels of comfort sharing their lifeworld information. For some patients, the comfort depended on the relationship between the HCP and patient. Some HCPs expressed concern about knowing too much of a patient’s lifeworld information, fearing the blurring of a professional line between patient and HCP. Other HCPs did not feel this would emotionally affect them in that way.

The topics that participants (both patients and HCPs) felt should be addressed about patients’ personal life could be grouped into five categories, (1) patient’s background, (2) experience during disease and treatment, (3) abilities and disabilities, (4) desires and needs with regards to health and disease, and (5) meaning and value of life.

For patients the preferred moments for sharing information about their personal life were during or before the clinical encounter. Sharing information during the consultation was considered suitable by almost all participants. Nonetheless, some patients expressed concerns that discussing their issues during a clinical visit may create pressure for them to recall all relevant topics. Moreover, the ability to discuss personal life topics was thought to largely depend on the quality of the communication between the HCP and the patient.

Sharing personal information before the consultation was considered feasible for patients because it would empower them to address topics they considered important. Also, it could help provide HCPs with initial information about who the patient is, making the first introduction easier. However, some patients raised the issue of not being able to deliver information beforehand due to physical or mental limitations. HCPs expressed a possible lack of time to go through extensive lifeworld information.

Sharing personal information through writing was received positively by all participants. A questionnaire was therefore deemed a suitable method to deliver written information from patient to HCP. Most participants preferred open questions because this allows for nuance. HCPs saw a special benefit in the patient writing down the information instead of themselves/their colleagues: “I imagine that (…) it is good because now the doctor writes it down. It is important to get it from the patient themselves. They probably describe it a bit different, or more extensive, or focus on other details” (HCP2). Visual methods of sharing lifeworld information such as photographs or videos received mixed reactions. Patients said photographs would not show that much of their life and therefore would not help as much as written information. HCPs felt like it would give them a quick snapshot of someone’s life, but expressed more worries about profiling, and did not want to scroll through a whole photo album. Also, profile photos with different persons other than the patient evoked problems regarding privacy of the others depicted.

Development of a prototype of the PCC tool

With the information from the interviews, the research team chose to not continue with the Patient profile PCC tool prototype and opt for a PCC tool that could be used before clinical consultation, consisting of a digital open-ended questionnaire. The topics regarding the patients’ personal lives considered relevant for care resulted in five questions. The questions were adjusted based on several research meetings and consultations with a patient panel (see Table 2). The IT department gave input on the formatting of the questionnaire. The title of the PCC tool was agreed on at a research meeting and is based on the hospital’s approach to person-centered care and the focus of initiating a partnership between the patient and the HCPs (in line with the concept of positive health [19], namely ‘We would like to know you’. Patients are invited to fill out this questionnaire voluntarily before the consultation. HCPs read the answers and touch upon the questionnaire during a moment in care to initiate or deepen the partnership.

Phase 3: Initial piloting

The PCC tool We would like to know you (patients aged > 18) for the rehabilitation and neuro-oncology department can be found in Table 4. The pediatric department used a version tailored to patients aged under 18, presented in Table 5.

Qualitative interview studies 2–4

In total, 31 HCPs from the different departments were interviewed about the use of the five-item digital questionnaire prototype PCC tool. The group consisted of physicians, nurses, psychologists, therapists (occupational, speech, or physiotherapists), and social or educational workers. At the neuro-oncology department, seven patients were interviewed.

Rehabilitation outpatient clinic

Fourteen HCPs (physicians, psychologists, occupational therapists, a physiotherapist, a speech therapist, and a social worker) were interviewed. HCPs mainly used the ‘We would like to know you’ questionnaire for the preparation of the first consultation and during peer or multidisciplinary discussions. Most respondents thought the information elicited with the tool was useful and valuable for care. It was a good starting point for the conversation and provided more insight into who a patient is as a person. Almost all HCPs had a positive experience using the questionnaire. In some cases, it was less useful when the questions were already touched upon during prior consultations regardless of using the questionnaire. HCPs appreciated the questionnaire was short. They thought the questionnaire was especially helpful for patients who generally need more time to think, for example because of their mental and/or physical limitations. A general mark was put forward by some HCPs regarding the accessibility of the approach in the EHR. Some wanted the PCC tool to have a more prominent (visible) place there.

Neuro-oncology outpatient department

Seven outpatients and six HCPs were interviewed. HCPs and patients were both able to use the questionnaire in the turbulent setting of a newly diagnosed life-limiting disease.

During this stressful process patients valued HCPs who showed interest in their concerns and personal preferences. ‘Well, I’ve been quite afraid of dying, at times I still am. And the moment that you choose [a treatment] and you choose wrong, and it hastens death or otherwise, that is what makes me insecure.’ (patient 3)

The majority of patients and HCPs thought the questions were relevant to their care and the questionnaire helped them preparing for consultations. “Every consultation is different. With one person you directly start talking about the treatment and with someone else you start with giving more attention to who is in front of you.” (HCP4)

Most patients filled out the questionnaire with their partner. Patients expressed that the information text accompanying the questions was useful. They valued that there was room for them to tell the HCPs what was important to them, and they thought the questions were helpful for the preparation of the consultation. I’ve briefly discussed the five, six questions with her [HCP] and I had the feeling that she understood what we [patient and partner] meant, so that was very clear I think. She [HCP] asked if the questions were clear for us. Should they go on with the list? I [patient] answered yes! (patient 3)

HCPs addressed the questionnaire during consultations in different ways. Some discussed all five questions, and others asked about specific parts of the patient’s answer. Sometimes the consultation focused on diagnosis, treatment, and prognosis of the disease, and the PCC tool was less influential on the interaction. HCPs did not always look at the questionnaire before the consultation, for example because of lack of time or because they forgot to check as it involved a new way of working. HCPs mentioned that using the questionnaire was a reminder to focus more on the personal aspect of a patient. Practically, they appreciated that the questionnaire was short. Some made recommendations regarding the accessibility and usability of the questionnaire, for example adding notifications when a patient had filled out the questionnaire.

Pediatric department

Eleven HCPs were interviewed (4 inpatient nurses, 2 educational workers, 5 physicians). Interviewees felt like the implementation of the PCC tool was still in an early phase and noticed that more patients from the outpatient clinic filled out the ‘We would like to know you’ questionnaire compared to inpatients. Most physicians thought that at least the treating physicians should be aware of the questionnaire’s content and viewed the questionnaire as desirable but not mandatory. Most did not always discuss the questionnaire, especially when the content was unsurprising, or it contained information they touched upon during the consultation regardless of the questionnaire. In the outpatient clinic, educational workers used the questionnaire to help identify children who were particularly anxious and needed additional guidance.

Almost all HCP thought that the questionnaire was useful to start a conversation. ‘’I like to see how everyone fills it in, sometimes there are very elaborate answers and sometimes very simple, but I have the idea that you sort of know someone a bit before they arrive.’’ (HCP1) It worked especially well for initiating contact with nervous children and was beneficial for making the conversation more time-efficient and smooth. Particularly the physicians felt like the questionnaire allowed the patients to take a more active role in the HCP-patient interaction. The overall opinion was that the questionnaire was easy to use and that the questions gave insight into the perspective of the patient. In the inpatient setting, some thought the questionnaire ‘We would like to know you’ was less useful because this setting allowed for fostering a patient-HCP relationship regardless of the questionnaire. At the same time, some stressed its potential by presenting the patients’ personal information, needs, and wishes clearly in the EHR. Respondents stated that potential barriers to using the questionnaire were limited response rates by patients or highly demanding care situations. Also, HCPs were worried that when the questionnaire was not discussed this could disappoint patients. They felt like other existent questionnaires were to some extent similar to the questionnaire and impacted the implementation. Additionally, the majority of HCPs agreed that they viewed questionnaires filled in by guardians less insightful for supporting PCC. They appreciated the questionnaire in offering an opportunity for the patient to state their personal wishes and worries in their own words. ‘’The child is an independent individual, and particularly in a situation where it isn’t purely physical, when a parents filles it in from the first-person perspective, that tells me little about the child.’’ (HCP5)

In sum, in both the rehabilitation department as well as the pediatric department, the questionnaire provided a good starting point for conversations. It elucidated useful and valuable information, as long as this information was not known prior to the appointment; for example from earlier consultations or other questionnaires. Practically, the departments all appreciated that the questionnaire was short. Barriers to using the PCC tool were the findability of the questionnaire in the EHR, and time limitations.

Content analyses

In total, 238 written patients’ answers were analyzed based on content and general interpretability.

A total of 374 neuro-oncology patients received an invitation to complete the ‘We would like to know you’ questionnaire. Overall, 20.9% (78/374) of the patients completed the questionnaire and saved their written answers. 42 questionnaires were analyzed. All 5 questions were answered by 88% (37/42) of the patients. Patients on average provided short answers to the five questions, using a median of 16 (IQR 7–27) words per question. Most of the answers were easily interpretable. The content elicited through the questionnaire appeared to be relevant for care, although not always surprising. This content analysis is detailed elsewhere [6].

For the pediatric department, 245 participants received an invitation to fill out the questionnaire. Of them, 196 patients filled out the questionnaire (80%). Most of these, 159 participants (81%), filled in every question in the questionnaire. The answers given were mostly easy to interpret and barely any answers digressed or were non-specific. Answers to the questionnaire were very personal and provided information such as fears the patients encountered, their character traits, or communication styles participants favored. 49 participants did not use the prototype of PCC tool, and 44 provided a reason for this.

These content analyses showed that patients provide interpretable answers that take little time to read.

Final tool

The tryouts showed that most of the respondents found the prototype PCC tool ‘We would like to know you’ to be usable and valuable for healthcare. Remarks regarding the visibility of the questionnaire were used to adapt the location of the questionnaire in the EHR. Slight textual adaptations regarding the information texts were made.

A detailed description of the PCC tool ‘We would like to know you’ is presented in Table 6, following the TIDieR checklist format [39]. The final questionnaires, both the adult patient version and pediatric version, are presented in Tables 4 and 5.

Discussion

We report on the participatory development process of a tool aimed at encouraging and facilitating patients and healthcare professionals to engage in person-centered care in a hospital setting. We cocreated the PCC tool called “We would like to know you”: a digital questionnaire with five open-ended questions. A few days before their consultation, a patient receives an e-mail invitation to answer these questions about their preferences, priorities, worries and expectations in life and health care. The HCP reads the answers to get a more holistic understanding of the patient. The piloting of the questionnaire showed that it is a usable tool for both patients and HCP, which assisted in exchanging patient lifeworld information between patients and health care providers.

The initial request for more person-centered care came from patients [40]. As PCC tools aim to generate care tailored to individual patients, the only way to develop useful tools is by including patients in the process of creating and researching such tools. We used Hawkins’ three stage framework for the cocreation process [24]; an iterative process with each step evaluated and adjusted together with stakeholders. The framework offers a strong foundation for developing public health interventions prioritizing stakeholder engagement and collaboration during the intervention design process. In our case, we first collected existing evidence for PCC tools in two evidence reviews. This offered a solid knowledge base to start discussions with stakeholders in stage two. As highlighted by Hawkins et al. [24], our process of coproduction was ‘both iterative and fluid’: a non-linear process, marked by numerous iterative phases and continual refinement prior to finalization. The development of the PCC tool ‘We would like to know you’ with stakeholders required many adjustments along the way, including the development of a prototype version ‘Patient Profile’ that was all together rejected. The piloting of the protype of the tool in stage three was done in a staggered manner in three different settings. This left time to reevaluate with the users (HCP and patients) and adjust the PCC tool.

Whilst others have reported difficulties recruiting participants to the workshops [22], we felt a strong commitment and continued interest from all stakeholders (patients and staff) throughout the process. For all involved, it was a positive experience. We did actively approach and sought alliances with departments and staff that underwrite the hospital’s commitment to patient involvement in care, research and education. Such coalitions are powerful to start change and create energy [41], yet, their engagement might not be representative of the entire hospital staff, which we need to take into consideration in the next phase of general wide implementation. Also, two members of the research team were deeply invested in keeping staff and patients of the test-sites specifically, and hospital staff in general, informed about progress or the lack thereof since the very beginning.

In total, the process took six months for the development of the prototype, and 2.5 years for the piloting, showing that cocreation is inherently time intensive [22, 23]. Resource and time constraints are often cited barriers that restrict collaboration at one or more steps in the process [42, 43]. This steady-paced, fully collaborative process was possible only through the careful line-up of master theses projects, which helped reducing costs and getting things done without external funding. This is a vulnerable process due to turnover of (student) researchers and potential loss of knowledge. The success can be dedicated to a) a core team of senior researchers with a diverse skills essential to the research activities (communication, qualitative research, ethics, coproduction, PCC) and b) a continued investment in the maintained relations with students and junior researchers.

Many others have created aids and tools to enable care focused on individual’s personal circumstances, values, needs and preferences [11, 36, 44–47]. The approaches to PCC of these aids and tools differ vastly. Some focus on the patient as a person, aiming to identify those key aspects of their lives that are integral to their being [11, 44–46] others have focused more on including patients’ core symptoms and/or health care decisions. For example, the recently developed MyPath project [34], focuses on PCC via continuous monitoring of patient-reported outcomes (PROs) that give insight into the patient’s health status during the care process. Furthermore, many authors have researched decision aids to empower patients in shared decision-making processes [48–50]. Our PCC tool empowers patients to share what is important to them, not just their biomedical data. The PDQ is one of the tools that has this same aim, and asks patients what is necessary to know about them as a person to provide them with the best care possible [11]. However, the PDQ is administered during a consultation; the presence of the HCP will yield different responses compared to filling out the WWLTKY questionnaire at a place and time of choice. Also, the answer to the PDQ is noted down by a HCP, resulting in notes giving a paraphrased version of the key aspects of the patient’s life shared. The PCC tool ‘We would like to know you’ provides a person-centered approach to communication by showing the patient’s present perspectives in their own words and is not reliant on the HCP prompting questions about a patient’s life world first.

The development process showed that making the PCC tool available is merely the first step towards full integration in health care provision. Whilst the tool was received favorably and integrated in the EHR, HCPs admitted to forgetting to read the notes prior to meeting the patient. Integrating a new tool in HCPs’ daily practice is not straight-forward and will require time and support for the HCP; identified hinderances are locating and reading the information provided by the patient. This tool is a first step in the delivery of PCC; the conversations between patient and HCP as a result of the information shared is what PCC is really about. Although the next step in the use of a tool like ‘We would like to know you’ could be the evaluation of the effect on health care conversations and choices, we suggest to evaluate not only those outcomes, but focus on patient empowerment, agency and patients’ experiences of being allowed to ‘just be’ during their health care encounters.

Strengths and limitations

As the PCC tool was developed together with patients and HCPs, the final product is based on patients’ preferences: a digital survey. Its full integration in the EHR makes it as easy to use for HCP as possible. The initiative for filling out the questionnaire lays with the patient, which empowers them in an inherently skewed power dynamic between patient and HCP. This has the limitation that if the patient takes their time to give information to the HCP, and they do not read it, it can lead to a bad use of time on the patient’s end. Furthermore, with the choice for a digital written tool there is the risk that use of the tool is limited to the more resourceful (digitally savvy) patients. It does not allow those most vulnerable patients that struggle with literacy to get more empowered.

Conclusion

Through cocreation with patients and other stakeholders, we created and piloted a tool promoting PCC. The digital questionnaire with five open-ended questions called “We would like to know you” gives patients the opportunity to provide information about their personal preferences, worries and needs to their HCP before a clinical consultation. Through an iterative development process, we included patients and HCP in the creation of the format, content and user guidelines of this tool. Piloting of the tool showed that it is usable for most users, and it aided in the sharing of patient lifeworld information between patients and health care providers.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Abbreviations

PCC

Person-centered care

HCP

Healthcare professional

ACP

Advanced care planning

PDQ

Patient dignity question

WWLTKY

We would like to know you

HER

Electronic health record

PRO

Patient-reported outcome

AHP

Allied health professional

Author contributions

In the methods section you can find detailed information on which author performed what part of the research. JB prepared the tables. HWW supplied the figures. LdK prepared the supplementary file. All authors drafted, edited and approved the manuscript.

Funding

No funding was used for this project.

Data availability

The data used and analyzed during the current study are partly available in the additional file, and the rest of the data is available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

All parts of this study were exempt from ethics approval from the REC according to Dutch law. Informed Consent was obtained from all participants.

Consent for publication

Not applicable.

Competing interest

The authors declare no competing interests.