Introduction
Primary care is defined as “an integrated, accessible system by health and welfare providers who deal with a large majority of personal health care needs, developing sustained partnership with patients, and practicing in the context of family and community” [
1]. In the context of the increasing number of people living chronic and complex care needs (i.e., “patients”) the importance of a primary care system cannot be understated [
1]. Primary care is the setting where care for these patients mostly takes place, and care plans are developed. These care plans, often including an overload of medication prescriptions, referrals, etc. can make patients feeling overwhelmed and might result in fragmented care [
2,
3]. The treatment burden reported by these patients raises the question on how primary care should be best transformed to better meet their needs and improve their quality of care and life [
4].
To do so, the World Health Organization (WHO) recommends a shift towards person-centered integrated care (PC-IC) with a focus on patients’ personal goals [
5,
6]. A person-centered health system on the one hand builds on empowering people to participate in their care process, tailoring care delivery to their needs, and valuing the input and support of informal caregivers [
7]. Integrated health services, on the other hand, “manage and deliver care in a way that ensures people receive a continuum of health promotion, disease prevention, diagnosis, treatment, etc. at the different levels and institutions of care within the health system, and according to their needs throughout their life course" [
5].
Following these WHO global recommendations, the Flemish primary care system (Dutch-speaking part of Belgium) is transforming to better support primary care practices, and foster intersectoral and interprofessional collaboration. One of the core strategies in this primary care reform is to explicitly direct care on the patients’ personal goals [
8]. To support this transformation, different organizations are established to link policy and practice, to translate governmental objectives into actions, and set up new partnerships among all primary care stakeholders. An example of such governmental organization, is the Flemish Institute of Primary Care (FIPC) that develops policy plans and strategies for local primary care settings [
9]. Besides this example, other projects were established through public financial support such as the Primary Care Academy, funded by the King Baudouin Foundation. The Primary Care Academy focusses on primary care research and its implementation in education [
10]. More locally, practice-based projects have emerged to strive for better coordination and cooperation between individual primary care stakeholders and organizations and promote a focus on the patients’ personal goals [
8]. The common ground of all these initiatives is the aim to develop strategies or interventions to pursue a focus on patients’ personal goals [
4].
A focus on patients’ personal goals is hypothesized as a catalyst for developing a person-centered and integrated health system [
11]. It might also be worthwhile to direct care on patients’ personal goals as it seemed to improve the social well-being, physical well-being, and satisfaction of people with chronic conditions and from those who deliver care, and thus improve their quality of care [
7,
12‐
14]. Despite the relevance and potential of putting patients’ personal goals first, there is still a knowledge gap about the actions needed to facilitate this transition in primary care [
15]. These actions could be situated in the field of research, practice, and policy and should result in well-designed models of practice or interventions and policy plans [
4]. As a first step in this process, it is important to incorporate viewpoints of all primary care stakeholders (scholars, primary care providers, and policy makers) into a comprehensive understanding of the idea “putting patients’ personal goals first”. Therefore this study aims to explore the experiences of scholars, primary care providers, and policy makers to formulate suggestions about what these actions should include.
Discussion
This study examined the experiences of primary care stakeholders towards putting patients’ personal goals first, the strategies they use, and the challenges they encounter when doing so. The structural analysis resulted in six themes of which four of them described main strategies. First, the participants reported that they intrinsically created space towards their patients to explore what is meaningful for them. Second, they informed patients about the treatment options to combine their own medical expertise to patients’ personal goals and strive for the best quality of life as defined by the patient. Third, they listened to the patients’ significant others to elicit their goals and value everyone’s role during the care process. Fourth, they integrated patients’ personal goals during interprofessional collaboration. However, to engage patients in sharing their goals and being able to put the patients’ goals first, the participants encountered two main challenges. In the field of education, focus should be put on equipping (future) providers with the needed competencies to discuss patients’ personal goals. In the field of policy, organizational transformations have to occur prior to sustainable putting patients’ goals first.
Our interview data showed that primary care providers had an intrinsic attitude to put patients’ personal goals first by exploring their values and that what is meaningful for them. However it is not straightforward to inherently align care plans with patients’ personal goals [
22,
23]. Weir et al. for instance interviewed general practitioners (GPs) about their perspectives on discussing patients’ personal goals and preferences in regard to medicine management [
22]. They found different patterns in GPs practices ranging from ‘considering goals as a low priority’ to ‘goals are central’, indicating that not every GP puts this high on his agenda [
22]. Looking further into the literature, Ospina et al. observed how patients’ agendas were elicited during clinical encounters [
23]. They reported, contrasting with our findings, that only in half of the primary care encounters the patients’ agenda was elicited and in the other half the providers interrupted their patients too early in their story [
23]. As the providers’ experiences contrast with observable results, it can be discussed if providers indeed intrinsically focus on patients’ personal goals or just have the feeling they do.
Reflecting further on the finding that the participants implicitly focused on the patients’ personal goals, it can be questioned if there is indeed a focus on the patients’ personal goals (e.g., ‘I want to visit my overseas friends’) instead of a direct focus on the treatment decision, named in the literature as health-related goals (e.g., ‘I don’t want to take my medication because they make me tired’). The literature bears this doubt and describes that providers tend to go more along with the patient’s health-related goals instead of their personal goals [
24‐
26]. Whether there is a focus on personal or health-related goals, our findings and the literature describe that goals should be placed in the context of the patients’ values and primarily focus on improving the patients’ quality of life [
27,
28]. Therefore, patient-provider dialogue is important to integrate those both perspectives and formulate questions as ‘How will these test results help achieve the patients’ goals of care?’ [
27,
28]. Raising awareness of primary care stakeholders about these differences is important as a focus on personal goals illustrates the shift away from the traditional, disease-oriented paradigm [
29,
30].
Another aspect that was mentioned by the primary care stakeholders, was the importance of involving the patients’ significant others in developing the care plan. Based on the literature, this social environment could play a crucial role in supporting patients to better deal with their complex situation resulting in better prognoses, stress relieve, etc. [
31]. We would have expected that by discussing everyone’s goals and roles conflicts could arise, but neither our results or the literature points to that. So described Kaldjian that a shared understanding could be formulated when goals are explained or negotiated [
28]. Despite the benefits of involving significant others such as the informal caregiver, it is unclear how that should be organized [
32]. This unclarity was also shown in our results as there seemed to be no uniform way to do so. However, when the roles of patients and informal caregivers are recognized within a team setting, it helps the providers to better understand the perspectives of patients and informal caregivers [
32]. It might also make the patients feel more supported and satisfied [
33,
34].
Despite the eagerness and willingness of the primary care stakeholders to put patients’ personal goals first, they reported the need to develop competencies to do so. A recent scoping review explored the needed knowledge, skills, and attitudes primary care providers must have to deliver person-centered and integrated care. They concluded that the current literature is lacking information about what competencies are needed and how they should be acquired [
35]. In any case, primary care providers should be better equipped to make the shift from medical oriented goals towards the patients’ personal goals [
36]. To succeed, other concepts in which patients’ personal goals are one of their central pillars might be inspiring. A concept wherein patients’ personal goals get a prominent position is goal-oriented care. In goal-oriented care, care is organized around the patients’ personal goals [
30]. It is a promising concept to explore further in regard to the role of patients’ personal goals in care delivery [
30]. Also narrative-based medicine might be inspiring as providers try to bridge the gap between the patients’ story and their own story by exploring fears, feelings, and emotions to develop a deeper understanding on their patients [
37]. But again, it is not clear which competencies should be developed to deliver goal-oriented care or narrative-based medicine [
38]. All findings considered, there can be concluded that more attention has to be given to identifying and developing the needed competencies to integrate patients’ personal goals into care delivery. This should already be addressed in higher education but, once more, the knowledge of how to integrate this into existing programs is lacking [
35]. Fortunately, the future looks bright as several initiatives are being taken to strengthen primary care such as the capacity building of primary care research (e.g., Primary Care Academy).
These initiatives – in practice and in education – are important as one of the major barriers is situated at the policy level. Therefore, the policy makers are important stakeholders to get on board to support the adoption of putting patients’ personal goals first [
36]. One of the recommendations the participants made, is to acknowledge goal-setting as a full-scale intervention so primary care providers will be rewarded for their time investment. Only in this way, the needed models of practice and policy plans could be developed to work towards a person-centered integrated care system [
4].
Strengths and limitations
Some strengths and limitations go along with the choice for a focus group methodology. First, we have chosen for a phenomenological-hermeneutical design which could seem odd for analyzing focus groups as it aims to deepen lived experiences of individuals which is more related to in-depth interviews. Though, Bradbury et al. described that it is a well-suited design for focus groups as individual lived experiences could also be captured within a group context and it is even beneficial to stimulate discussion and open new perspectives [
18]. Nevertheless, it was quiet a challenge to capture the lived experiences of the different participants which could have led to a more abstract description of the themes rather than a description of their lived experiences. However, we have tried to nuance between the different participants’ professional backgrounds and their lived experiences in the description. Second, the participants in our study represented a broad range of primary care stakeholders going from primary care providers to scholars. These different views were an added value to enrich the discussions and gain a representative sample of all people involved in primary care. Moreover, this broad range helped to generate a common understanding on the idea of ‘putting patients’ personal goals first [
39]. Third, the different waves not only allowed to deepen the results, but also increased credibility among them and assured data saturation which was achieved in the fourth wave as no new information emerged. In this way the results of any previous wave were also validated. Fourth, this study was conducted by a team of researchers with different backgrounds (occupational therapists, general practitioner, pharmacists, and gerontologist) which reduced the risk of interpretation bias as personal opinions and previous knowledge could not prevail. A reflective attitude was the pillar of the analysis.
Suggestions for future research
This study adds knowledge on how patients’ personal goals are put first in primary care in Flanders and provides important information to take into account when outlining future research. Future research should focus on identifying the needed competencies to put patients’ personal goals first and translate these competencies into guidance or training packages. The premise of this guidance should be that primary care stakeholders learn how to make the shift from the disease-oriented paradigm to a focus on patients’ personal goals. Besides this education -oriented research, research should also focus on integrating the patients’ perspectives into an understanding on how their goals are addressed during consultations. Therefore, it would be interesting to bring all stakeholders including patients, primary care providers, policy makers, and scholars together to generate a shared understanding on putting patients’ personal goals first by means of a participatory action research.
The Primary Care Academy
Roy Remmen4, Emily Verté4,8, Muhammed Mustafa Sirimsi3,4, Peter Van Bogaert9, Hans De Loof10, Kris Van den Broeck4, Sibyl Anthierens4, Ine Huybrechts4, Peter Raeymaeckers11, Veerle Buffel12, Dirk Devroey8, Bert Aertgeerts5, Birgitte Schoenmakers5,13, Lotte Timmermans5, Veerle Foulon14, Anja Declerq15, Nick Verhaeghe16, Dominique Van de Velde1,6, Pauline Boeckxstaens2, An De Sutter2, Patricia De Vriendt1,6,7, Lies Lahousse17, Peter Pype2,18, Dagje Boeykens1,2, Ann Van Hecke2,19, Peter Decat2, Rudi Roose20, Sandra Martin21, Erica Rutten21, Sam Pless21, Vanessa Gauwe6, Didier Reynaert22, Leen Van Landschoot23, Maja Lopez Hartmann24, Tony Claeys25, Hilde Vandenhoudt26, Kristel De Vliegher27.
8Department of Family Medicine and Chronic Care, Faculty of Medicine and Pharmacy. Vrije Universiteit Brussel, Brussel, Belgium.
9Workforce Management and Outcomes Research in Care, Faculty of Medicine and Health Sciences, University of Antwerp, Belgium.
10Laboratory of Physiopharmacology, Faculty of Pharmaceutical Biomedical and Veterinary Sciences, University of Antwerp, Belgium.
11Department of Sociology, Faculty of Social Sciences, Faculty of Social Sciences, University of Antwerp, Belgium.
12Department of Sociology; centre for population, family and health, Faculty of Social Sciences, University of Antwerp, Belgium.
13Department of Public Health and Primary Care, Faculty of Medicine, KU Leuven, Leuven, Belgium.
14Department of Pharmaceutical and Pharmacological Sciences, Faculty Pharmaceutical Sciences, KU Leuven, Leuven, Belgium.
15LUCAS-Centre for Care Research and Consultancy, Faculty of Social Sciences, KU Leuven, Leuven, Belgium.
16Research Group Social and Economic Policy and Social Inclusion, Research Institute for Work and Society, KU Leuven, Belgium.
17Department of Bioanalysis, Faculty of Pharmaceutical Sciences, Ghent University, Ghent, Belgium.
18End-of-Life Care Research Group, Faculty of Medicine and Health Sciences, Vrije Universiteit Brussel and Ghent University, Ghent, Belgium.
19University Centre of Nursing and Midwifery, Faculty of Medicine and Health Sciences, University of Ghent, Belgium.
20Department of Social Work and Social Pedagogy, Faculty of Psychology and Educational Sciences, University Ghent, Belgium.
21Expertise Centre Health Innovation. University College Leuven-Limburg, Leuven, Belgium.
22E-QUAL, University College of Applied Sciences Ghent, Ghent, Belgium.
23Department of Nursing, University of Applied Sciences Ghent, Ghent, Belgium.
Maja Lopez Hartmann.
24Department of Welfare and Health, Karel de Grote University of Applied Sciences and Arts, Antwerp, Belgium.
Tony Claeys.
25LiveLab, VIVES University of Applied Sciences, Kortrijk, Belgium.
Hilde Vandenhoudt.
26LiCalab, Thomas University of Applied Sciences, Turnhout, Belgium.
Kristel De Vliegher.
27Department of Nursing – homecare, White-Yellow Cross, Brussels, Belgium.