Establishing the research agenda for oral healthcare using the Dialogue Model—patient involvement in a joint research agenda with practitioners

INTRODUCTION

In many medical research fields, a mismatch between research and practice has been reported. This mismatch concerns a gap between current research topics and the research needs of end-users of research in particular [1, 2]. Traditionally, research topics in the oral healthcare field have mainly been based on the established interests from academic research groups, funding agencies, or the dental industry [3]. As a result, research addressing technical and scientific challenges dominates the current oral healthcare research while research on the effects of prevention, patient-reported outcomes of care, and the quality and organization of oral healthcare remains scarce [4]. The engagement of end-users of oral healthcare research, mainly oral healthcare practitioners (OHPs) and patients, in research planning and programming, for example, through the composition of a research agenda which reflects their research needs, is essential to reduce this gap [5, 6].

Addressing the needs of the OHPs and patients in research on oral health and oral healthcare increases its societal relevance [5]. While OHPs encounter treatment uncertainties and knowledge gaps in daily practice, patients experience oral health(care) problems in their daily life that can have functional and psychosocial impacts on many aspects of life [7]. Thereby, their unique perspective complements the perspectives of OHPs. Next to the argument of a unique perspective, the involvement of patients and their perspectives adds to the legitimacy of research, since patients may benefit from the results thereof [8]. Another important argument for involving patients has a normative ground: the research outcomes will impact the health and well-being of patients. Therefore, it is their right to have a voice in research decision-making [9, 10]. Both stakeholder groups provide unique and important perspectives. When these perspectives are aligned in a set of joint priorities, these may serve to inform and shape future oral healthcare research.

The overall aim of the current study was to establish a research agenda with the most important topics for future research on oral health and oral healthcare from the perspective of health and well-being. The information needs of the users of oral healthcare research—OHPs and patients—form the basis of the research topics on the agenda. The aim of this paper is twofold: we first aim to reflect on the establishment of the research priorities of patients. Next, we reflect on the integration of the research priorities of patients with the previously established research priorities of OHPs through a dialogue meeting. The research priorities of OHPs are published elsewhere [11]. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist has been followed in the reporting of this research [12, 13].

MATERIAL AND METHODS Methodology

This research agenda-setting project was initiated by the Department of Oral Public Health of the Academic Center for Dentistry Amsterdam (ACTA). The principal investigators with a background in epidemiological and dental research collaborated with researchers from the Athena Institute of the Vrije Universiteit Amsterdam, who have extensive experience in patient involvement in health research.

To develop a joint research agenda, we followed the methodology of the Dialogue Model [6]. The Dialogue Model involves a participatory research approach, which facilitates needs articulation and knowledge co-creation of relevant stakeholders. It is based on a responsive methodology and the Interactive Learning and Action Approach. The approach rests on the premise that after articulating stakeholders’ perspectives, integration of the perspectives can take place [14].

The use of the Dialogue Model is guided by six principles: (i) active involvement of end-users (including OHPs and patients), (ii) adaptation to social conditions, (iii) respect for experiential knowledge of end-users, (iv) dialogue and partnership, (v) emergent and flexible design, and (vi) independent facilitation. The Dialogue Model is designed to follow six phases: exploration, consultation, prioritization, integration, programming, and implementation. In the project reported here, we applied the first four phases (Table 1).

TABLE 1. Dialogue Model: Phases Phase Aim Actions 1. Exploration Create good social conditions for the dialogical process and gain a first understanding of the stakeholder issues. The project team identifies and contacts patient and professional organizations, and informs and motivates potential participants about the project. 2. Consultation Establish the research priorities of each stakeholder group. Consulting each group separately since asymmetries between stakeholders can prevent meaningful interaction right from the start; professionals need to be sensitized to respect the experiential knowledge of patients while patients first need to go through a process of empowerment to prepare them for a more equal interaction with professionals. 3. Prioritization Prioritize the research topics per stakeholder group. A questionnaire is an appropriate method to identify the priorities of larger groups, while a Delphi study is more suitable for smaller groups. 4. Integration Integrate the prioritized topics of all stakeholder groups via dialogue. A dialogue meeting with representatives of all relevant parties is organized to foster negotiation about the research agendas. Given the asymmetries between stakeholders the dialogue should be carefully prepared to give each stakeholder group a ‘say’. An equal number of patients and professionals, selection of participants with an open mind, and the use of non-technical language help to create a fair and meaningful process. Staged approach

To allow sufficient opportunity to sensitize OHPs towards the experiential knowledge of patients in the project, patient involvement was gradually introduced. Therefore, the research priorities of OHPs were established first. In the exploration phase, an introduction meeting to engage opinion leaders from different stakeholder groups was organized to create support for the project. A project steering group to provide feedback and advise the project team was composed. In the consultation phase, OHPs were asked to share their treatment uncertainties and suggestions for future research topics in an online survey. In total, 937 topics were suggested by 210 OHPs. Through direct content analysis, the suggested topics were translated into 84 research topics. These were categorized into 10 categories.

Next, in the prioritization phase, the 84 research topics were prioritized in an online survey, and two topics per category were chosen. The 20 chosen topics were presented and respondents were asked to rank the top 5. Two hundred thirty-five OHPs filled in this online survey. These research topics were sorted by the product of their frequency of endorsement and priority. This resulted in the identification of the top 10 research priorities. The development of the research priorities of OHPs has been described in detail previously [11].

In this paper, we focus on the research priority setting of patients and the integration with the priorities of OHPs via a dialogue meeting. During the prioritization phase of OHPs, the research priority setting process of patients was commenced (Figure 1).

image The timeline of the research agenda-setting project. The orange boxes display the activities for each phase of the project, per stakeholder group. The study that describes the development of research priorities of OHPs in detail has been published previously [11]

Data were collected from April 2018 to January 2019 in the Netherlands, proceeding through the four phases of exploration, consultation, prioritization, and integration, described separately in the paragraphs below.

Exploration

Patient involvement in this project was not obvious. The oral healthcare patient does not exist as such, and the patient group is not clearly defined. This impeded targeting and approaching a specific patient group. To facilitate patient involvement in this project we targeted patients with chronic diseases in the consultation phase, namely people suffering from diabetes mellitus, cardiovascular diseases, depression, rheumatic disorders, or lung diseases. We based the selection of chronic diseases on the one hand on the increased risk for oral health(care) problems, and on the high prevalence and burden of disease on the other [15-20].

A patient organization was contacted for each patient group. Through these five patient organizations, patients were recruited for the consultation phase. For some patient groups, the recruitment of patients via patient organizations was difficult, as not all organizations regarded problems with oral health to be important for their patient group [21]. Additionally, a bottom-up approach through social media and patient meetings was used to recruit a sufficient number of participants for the consultation phase from all targeted patient groups.

Consultation

In the consultation phase, the problems that patients experience in their daily lives regarding oral health(care) were mapped during four focus group discussions. The aim of this phase was to establish the research priorities for patients through in-depth qualitative methods. A moderator, assisted by research team members, chaired the focus group discussions. We expected recognition of problems amongst patients suffering from the same disease to stimulate discussion and create a safe environment. Therefore, we organized a focus group discussion for each patient group separately. At the start of the focus group discussion, each participant was asked to list the problems they encountered with oral health(care). These were then discussed within the group. The moderator and research team members grouped the listed problems and informally translated their underlying narratives to create a list of topics. Topics were inductively categorized and thematically labeled. Confirmation for the listed topics was sought from focus group discussion participants. If relevant topics were missed, they were added to the list.

For people with depression, we did not manage to organize a focus group discussion. For this patient group, we collected data through three semi-structured interviews. Patients were asked about their problems with oral health(care) and were asked if common oral health(care) problems as described in the literature applied to their situation. After each focus group discussion and the three interviews, a summary of the findings was sent to all participants for respondent validation.

In total, 30 patients volunteered to participate in the focus group discussions and interviews. In Table 2, an overview is found of the number of participants and demographics per patient group.

TABLE 2. Characteristics of participants of the consultation phase Patient group Number Gender (female/male, n) Mean age (years) Depression 3 3/0 39 Diabetes mellitus (DM) 7 3/4 66 Heart disease 6 1/5 79 Lung disease 6 4/2 64 Rheumatic disorders 8 7/1 64 Total 30 18/12 65 Prioritization

In the prioritization phase, the research topics collected in the consultation phase were prioritized through a survey study. Thereby, the results from the small number of representatives in the consultation phase were validated among a larger sample of patients.

The survey was distributed amongst the patient panel of the Netherlands Patient Federation (NPF). This federation represents over 200 patient organizations [22]. The NPF panel consists of over 20,000 volunteers with different medical backgrounds. All panel members received a general newsletter in which the survey was announced. If panel members indicated that they were interested to participate, they received a subsequent invitation to the survey in a separate mail distributed by the NPF. Approximately 3000 panel members positively replied to this announcement. In addition, patient platforms on social media were used to recruit respondents. Therefore, not only patients suffering from chronic diseases as targeted for the focus group discussion and interviews but patients in general (irrespective of the presence of a disease) were targeted for this survey.

The outcomes of the consultation were translated into 32 research topics categorized into five research themes and presented in the survey as such. We used Qualtrics software (Version 2018; Qualtrics) for the survey. Participants were asked to select their two most important topics for each of the five research themes. Subsequently, participants selected and ranked their top 3 from the list of 10 selected topics. At the end of the survey, patients were asked to suggest research topics they had missed in the survey. Data were collected on demographic characteristics, notably age and gender, as well as on the presence of any disease. If respondents were interested in participating in a meeting to establish a joint research agenda together with OHPs, they were requested to provide their e-mail address. Based on the survey data a list of the top 10 research topics of patients was determined.

Integration

In the previous phases, the research topics of both patients and OHPs were obtained from representatives and prioritized among a larger group. The prioritized topics that resulted from these phases form the basis of the dialogue meeting. To establish the joint research agenda, a dialogue meeting was organized for patients and OHPs. The aim of this meeting was to integrate the prioritized research topics of OHPs with the prioritized research topics of patients.

A total of 21 participants represented the patients and OHPs during the dialogue meeting, of which 11 were patients and patient representatives and 10 were OHPs. We aimed for an equal distribution of participants from both patients and professionals to ensure equal representation. The participating patients had different backgrounds in terms of diseases. The ten participating OHPs represented a variety of OHPs, notably general dentists, specialized dentists, dental hygienists, and a dental technician. In Table 3, the characteristics of each participant are described. Five of the participating OHPs had attended previous meetings during the project to establish the top 10 research topics of OHPs.

TABLE 3. Characteristics of each participant of the integration phase Patients OHPs Gender Condition Gender Profession F High blood pressure F Dentist for patients with special needs F Rheumatic disorder, DMII F Periodontologist M Psoriasis F Dental hygienist M Morbid obesity M General dental practitioner F Fibromyalgia and myalgic encephalomyelitis F General dental practitioner M ADHD and PTSD M Dental technician F Myalgic encephalomyelitis M Endodontist M None F General dental practitioner F Bechterew's disease F Periodontologist F Patient representative Rheumatic disorders M Implantologist and geriatric dentist F Patient representative Diabetes mellitus

We invited patients based on two criteria. First, at least two out of three prioritized topics of the participant had to be included in the patients’ top 10 list. Thereby, we ensured that topics prioritized by each participant were represented at the meeting. Second, we aimed for a patient group that represented a broad variety in terms of medical background and invited participants accordingly.

An independent moderator facilitated an open and safe climate to ensure equal dialogue [23]. After explaining the aim of the meeting, the top 10 research topics list of OHPs and the top 10 research topics list of patients with diseases were presented. We stratified the results of the prioritization survey for respondents without chronic disease. Four topics were prioritized by this group that were not found in the top 10 list of all patients. These four topics were added as a starting point for the consensus meeting since these topics could be of importance to the public at large. The resulting list with the 24 most important topics formed the basis of the dialogue.

The participants were assigned to four smaller discussion groups (dialogue meeting groups), in which professionals and patients were evenly distributed. The aim of the dialogue meeting groups was to discuss the priorities in depth in a smaller setting. This increased mutual learning of other perspectives and stimulated reflection on one's own priorities. Each dialogue meeting group was chaired by a moderator to ensure an equal contribution in the dialogue for both patients and professionals.

The dialogue meeting group started with each participant naming his or her three most important topics of the 24 topics presented. These topics were not restricted to the stakeholder group they represented, that is, patients were allowed to prioritize topics from OHPs, and OHPs were allowed to prioritize topics from patients. All participants explained their choices to provide other dialogue meeting group participants insight into each other's perspectives. Next, each dialogue meeting group was asked to establish an integrated top 10 through constructive dialogue. During this dialogue flexibility for rephrasing and adding topics was allowed if consensus could thereby be obtained. The results of each dialogue meeting group were presented and discussed during a final plenary session. After this plenary session, each participant was again asked to select his or her individual top 3. Based on the results, an integrated topic list shared by patients and OHPs was determined. The design of the meeting ensured room for individual choice and consideration while mutual appreciation and understanding for other opinions or perspectives were encouraged.

The data that emerged up through the integration phase were then analyzed by the researchers through the three steps of consultation, prioritization, and integration, described successively below.

Data analysis consultation

All focus group discussions and interviews were audio-recorded and transcribed verbatim in Dutch. Transcripts were analyzed and evaluated to identify problems in oral health(care) using a directed content analysis approach in Dedoose software (version 8.0.36, 2018, SocioCultural Research Consultants). Topics that were collected on sight during the focus group discussions formed the basis of the coding tree. New topics were added to the list based on transcript analysis when required. Problems mentioned by participants during the focus group discussions that overlapped or were strongly related were merged into research topics. The research topics were grouped into five overarching research themes after all focus group discussions and interviews were completed. This was done by PW and regularly discussed and checked by FH. PW and FH discussed the coding tree, and the coding of the first focus group discussion was discussed in depth.

Data analysis prioritization

Survey data were analyzed by SPSS version 26.0 (2019, IBM). Selected research topics were sorted by the product of their frequency of endorsement and weight to determine their ranked position.

Integration

The moderators of the dialogue meeting groups clarified and discussed the results of their integrated top 10 topic list with each other and the project team. Specifically, topics that required rephrasing or merging, according to the participants of the dialogue meeting group, were discussed and interpreted. The research topics prioritized by the dialogue meeting groups were used for individual voting. The individual top three topics that were selected at the end of the dialogue meeting were used to determine the integrated top 10 topics list shared by patients and OHPs. Topics were ranked to establish the joint research agenda, including those chosen most frequently.

Ethical considerations

This project concerns Health Services Research which has been approved by the Ethics Committee of the Academic Centre for Dentistry (document number 2018009 dd February 15, 2018). Under the Medical Research Involving Human Subjects Act (WMO), Health Services Research projects are not considered as medical-scientific research [24]. As such, neither ethics clearance from a Medical Ethics Research Board nor individual consent of volunteering participants of focus groups or surveys is required.

All participants in the consultation phase received written and verbal information beforehand. Participation was voluntary and all were informed that they could withdraw at any time. With prior verbal permission of participants, the interviews and focus group discussions were recorded and the transcripts were anonymized. Thereafter recordings were deleted.

The introductory text of the survey in the prioritization phase contained information on the background, the aims of the study, and the voluntary basis of participation. In line with General Data Protection Regulation on data safety and privacy protection, tracing back responses to individuals participating in the survey for the prioritization phase was not possible [25].

RESULTS

To establish a joint research agenda, the perspectives of OHPs and patients on research priorities were integrated. The research priorities of OHPs were established first and reported elsewhere [11]. In this section, we first describe the oral health(care) problems of patients that were identified in the consultation phase, and how these were translated into research topics. Next, we present the results of the survey in which patients prioritized research topics. Last, the results of the integration phase, the dialogue meeting, are described.

Consultation phase

Focus group discussion participants provided disease-specific as well as more general problems concerning their oral health(care). When these were thematically grouped and listed as research topics five main themes emerged, notably (i) oral symptoms, (ii) lack of information on oral health(care), (iii) problems in daily life, (iv) organization and design of (oral) healthcare, and (v) the role of (oral) healthcare professionals.

In this manuscript, we present the oral health(care) problems mentioned by patients per research theme. These problems were translated into 32 topics and presented per theme in the prioritization survey (Table 4). All topics in this section are indicated by a number that refers to the topic number in the survey as found in Table 4 (example: 1-3 refers to the third item, ‘Dry mouth,’ under the theme ‘1. Oral symptoms’ in the Table).

TABLE 4. Research topics per theme 1. Oral symptoms 1-1. Oral fungus 1-2. Problems with my jaws (pain, limited opening of my mouth, stuck) 1-3. Dry mouth 1-4. Inflammation of the gums 1-5. Caries/dental cavities 1-6. Periodontitis 1-7. Problems with dental implants 1-8. Sleep apnea 2. Lack of information on oral health(care) 2-1. Providing information on oral health regarding my medical condition 2-2. How patients can participate in decisions on their oral healthcare treatments 2-3. What medical information should I provide to my OHP, and how should it be provided 2-4. Where do I find reliable information about my chronic condition and oral health 2-5. Exchanging experiences and information with other people suffering from similar conditions 2-6. How patients can participate in scientific oral healthcare research 3. Impact of oral health(care) problems on daily life   3-1. How to cope with problems concerning oral health, for which no solution is (yet) available 3-2. Effective Products for oral (self)care 3-3. Oral care products that I can use, despite my physical disability 3-4. How to motivate myself to take care of my oral health 3-5. How to motivate myself to visit my OHP 4. Organization and design of (oral) healthcare 4-1. How my oral healthcare professional can improve interaction with my medical professionals 4-2. The possibility to include oral healthcare to the basic insurance system 4-3. How access of oral healthcare practices can be improved for people with a physical disability. 4-4. Adjusting the time between consecutive (dental) appointments in order to optimally adjust them to my situation  4-5. Oral healthcare that is attuned to my condition. 5. The role of (oral) healthcare professionals 5-1. Increasing the knowledge of other healthcare professionals about the effect of my condition on oral health. 5-2. Increasing the knowledge of oral healthcare professionals about the effect of my condition on oral health. 5-3. Expanding knowledge of OHPs beyond their own field of expertise 5-4. Improve communication between OHPs and other healthcare professionals about my oral health problems 5-5. Improve communication between me and my OHP about my oral health problems and my chronic condition 5-6. Improvement of creating and updating my medical file by my OHP 5-7. Improve access to OHPs (e.g., finding a new dentist after moving, or finding an OHP specialized in treatment of patients with my medical condition Abbreviation: OHP, oral healthcare practioner. Oral symptoms

In total, eight topics concerning oral symptoms were mentioned during the focus group discussions and interviews. Some of these were unique for certain patient groups, such as oral fungus (1-1) for lung disease patients and painful jaws (1-2) for patients with rheumatic disorders. Other oral symptoms were mentioned in different focus group discussions. For example, problems due to a dry mouth (1-3) (diabetes mellitus, depression, lung disease) and inflammation of the gums (1-4) (rheumatic disorders, diabetes mellitus). Next to these, dental caries (1-5), periodontitis (1-6), problems with dental implants (1-7), and sleep apnea (1-8) were mentioned.

Lack of information on oral health (care) Patients almost unanimously stated that they lack information concerning their oral health(care). The six identified research topics within this theme apply to multiple aspects of oral health(care). For example, some participants felt they needed more information from their OHP about the relation between oral health and a chronic condition (2-1). Participant 3 from the diabetes mellitus focus group discussion stated:

I think it is very important that the OHP discusses: Do you suffer from this and use that medication? It is important to take that into account [in your dental treatment plan].

Some patients felt they miss crucial information to make decisions about (future) oral healthcare treatments (2-2). Participant 3 from the heart disease focus group discussion noted the following.

Sometimes you have to make treatment decisions, and I think OHPs are often reluctant to give sufficient information.

In the focus group discussion of patients with lung disease, there was a discussion on which medical information should be shared with your OHPs (2-3). Some participants stated that as a patient you should provide all information on the first visit, others doubted the importance of such information to the OHP.

Another topic concerns sources of reliable information for patients about their chronic condition and oral health (2-4). As Participant 5 of the heart disease focus group discussion stated:

I feel like the Internet is like a fallen bookcase. You are just not sure the right books are on top.

Many focus group discussion participants expressed they value the exchange of experiences and information with other people suffering from similar conditions, but are unaware of possibilities regarding this (2-5).

Some participants also missed information on how they could contribute to scientific oral healthcare research (2-6).

As far as research is concerned, researchers may be working on all sorts of things. I wonder if there is research in the field of oral care, to which I can contribute in some way? (Participant 5, diabetes mellitus)

Impact of oral health(care) problems on daily life

Six topics were identified that covered (the coping with) oral health(care) problems in daily life. Many participants searched for solutions to cope with these problems and limit the impact. For example, Participant 4 of the diabetes mellitus focus group discussion had brought his charcoal toothpaste, which he had purchased after a thorough Internet search on how to reduce his gum problems. Other participants chose adaption to their situation as their coping strategy. This more general observation was translated in the topic ‘How to cope with problems concerning oral health, for which no solution is (yet) available’ (3-1).

Many participants experiencing oral symptoms tried to find effective oral care products (3-2). In the focus group discussion of patients with rheumatic disorders, Participant 5 stated that for her dry mouth

…… the gel just doesn't work. Neither does the spray. They all ended up at the back of a cabinet.

Other participants of the focus group discussion for patients with rheumatic disorders reported problems with the use of oral care products, for example, a toothbrush that is too heavy, toothpaste tubes they are unable to open. This resulted in the topic ‘Oral care products that I can use, despite my physical disability’ (3-3).

Other problems that patients encountered were a lack of motivation to take care of their oral health. For some, this applied to daily care (3-4):

…… because of diabetes I am so tired and I don't have the energy to do anything anymore in the evening. Yes, then I neglect my oral care. (Participant 6, diabetes mellitus)

While others encountered a lack of motivation to visit an OHP (3-5):

Of course, it is a form of self-care that you have to grant yourself and if you're feeling down you might make less of an effort. (Participant 3, depression)

Organization and design of (oral) healthcare Many participants encountered problems with the oral healthcare system, mostly because they experience it as an insular system with limited connection to other healthcare domains. Furthermore, many found oral healthcare to follow a one-size-fits-all principle with little attention for an individual situation. Four topics mentioned by the participants reflect this. First, some participants observed a lack of exchange of important information between OHPs and other healthcare providers as there is little integration between oral healthcare and other healthcare fields (4-1). Participant 6 in the focus group discussion of patients with rheumatic disorders noticed:

One of the advantages is that in recent years … all those doctors discuss your case together. I don't understand why the dentist is still not part of that.

Second, the (Dutch) dental insurance system does not consider the presence of a (chronic) condition as a reason for additional expenses required for maintaining oral health (4-2). Third, for some participants, the one-size-fits-all experience in oral healthcare was reflected in the fact that some oral healthcare practices are not adequately designed for people with chronic conditions (4-3). Participant 4 from the focus group discussion of lung diseases stated:

The dental hygienist is upstairs. So, you have to climb up the stairs if I go for a check-up and then I am completely out of breath.

Next to the physical design of the practice, participants also missed tailored recalls (4-4). A quote from Participant 3 of the focus group discussion of rheumatic disorders clarifies:

I had to persuade the dentist to allow me to visit three times a year instead of twice a year.

Moreover, some participants wondered why oral healthcare and dental treatments are not tailored to their specific situation (4-5). As Participant 1 from the lung disease focus group discussion pointed out:

The problem with dentists is that they obstruct my nose during the treatment with all kind of instruments devices they use.

The role of (oral) healthcare professionals The seven topics in this theme all concern the role and responsibility of OHPs and other healthcare professionals. For the most part, these topics reflect a lack of knowledge and communication issues. Participants encountered ignorance on different occasions and levels. Some found their OHP as well as their other healthcare providers ignorant of the effect of their condition on their oral health as reflected in the topics ‘Increasing the knowledge of other healthcare professionals about the effect of my condition on oral health’ (5-1) and ‘Increasing the knowledge of oral healthcare professionals about the effect of my condition on oral health’ (5-2). As Participant 7 of the focus group discussion of rheumatic disorders stated:

What I notice is that the rheumatologist didn't say anything at all about the connection between my disease and the mouth. Also, from the rheumatology nurse, I've never heard anything about it. Uh, my previous dentist didn't say anything about that either. I think they just don't know.

Participants found the knowledge of OHPs limited and felt OHPs should expand their knowledge (5-3).

An oral surgeon only covers one part of the body, just like a dentist, they never take the rest of the body into account. That's something that bothers me. (Participant 4, diabetes mellitus)

Moreover, participants experienced problems in communication between professionals. Only limited information exchange on oral health problems between OHPs with other healthcare providers takes place (5-4). Another topic concerned the need to improve communication between the OHP and the patient (5-5):

Well, that downplaying of the oral problems by my dentist makes me feel like I am not being taken seriously and that I'm not getting the right information. (Participant 5, rheumatic disorders)

A recurrent subject in each focus group discussion was how OHPs create and update their medical files (5-6). Some participants were not aware that OHPs are obliged to ask their patients about their medical status. On the other hand, some participants do not want to inform their OHP every visit.

Because you don't really want to talk about your condition all the time. After a few visits you don't need your OHP to talk about your condition again. (Participant 4, lung disease)

Finally, the role of OHPs in the improvement of accessibility to oral healthcare was discussed. One participant stated the following:

I would like to have access to a list of specialized OHPs for my rheumatic disorder. (Participant 4, rheumatic disorders)

Prioritization phase

The 32 topics in Table 4 were presented for prioritization in an online survey. In total, 1495 patients participated via the patient panel of NPF and social media and returned a complete survey. Characteristics of the participants of the survey are displayed in Table 5. Of the respondents, 321 had no (chronic) disease. Six hundred sixty-six respondents indicated they (also) had other diseases than diabetes mellitus, cardiovascular diseases, depression, rheumatic disorders, or lung diseases. Diseases that were often mentioned were cancer, physical disabilities, multiple sclerosis, different types of bowel diseases, and mental illnesses.

TABLE 5. Respondents of the survey in the prioritization phase Demographic characteristics N (%) Gender Male 588 (40) Female 897 (60)

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