Meaningful use of a digital platform and structured telephone support to facilitate remote person-centred care – a mixed-method study on patient perspectives

A convergent parallel mixed-method design [16, 17] was applied. This design enables quantitative results to be illustrated by qualitative findings.

This study is a part of a process evaluation of the RCT trial PROTECT (NCT03183817). Patients diagnosed with COPD and CHF listed in nine primary care centres in Sweden were included in the study. The intervention group in the PROTECT trial received remote PCC through a digital platform and structured telephone support as an add-on-treatment to usual care during the study period (six months). The intervention is described in detail elsewhere [6, 15]. Briefly, the intervention aimed to operationalise person-centred ethics into action by safeguarding the relational aspects of personhood in care relying on an evidence-based PCC approach [4, 18]. The support was designed to facilitate partnership between professionals and patients and also the patients’ families and friends. Structured telephone and digital platform support functions and working methods stimulate patients’ narration and agreement in health planning. Moreover, the digital platform was used to achieve shared documentation and transparency in the partnership. Health professionals representing different disciplines (nursing, physiotherapy, and occupational therapy) provided the intervention. See Table 1 for an overview of functions integrated into the intervention.

Data from quantitative and qualitative approaches were collected in parallel. The two approaches were given equal priority in data collection and analysis (Table 2).

The study was approved by the Regional Ethical Review Board located in Gothenburg, Sweden (063–17 and T613-18). We confirm that all methods were performed in accordance with the relevant guidelines and regulations. Written informed consent was obtained from all participants.

Data from 86 patients were included in this process evaluation, of which 44 people contributed to both qualitative and quantitative data collection. An overview of the participant characteristics and demographics is shown in Table 3.

Overall, 63.9% of the participants rated the combined digital platform and telephone support as meaningful to use, 14.5% rated it as non-meaningful and 21.7% answered that they did not know. The intervention component rated as most meaningful by most of the participants was telephone support, followed by being able to rate your daily health and having the possibility to contact health care professionals with a direct telephone number or by direct messaging through the digital platform (Table 4). Only one participant reported that the function of inviting family and friends to the digital platform was meaningful to use.

Participants with COPD showed a trend in rating the remote PCC intervention and its functions as more meaningful to use compared to people diagnosed with CHF and the total sample. This trend was also observed among participants living alone. Moreover, the proportion of participants rating the intervention and its different functions as meaningful was lower among people diagnosed with both CHF and COPD than those with one of the diagnoses, except for the function of using validated links (see Table 4).

Logistic regression was performed to assess the likelihood of patient characteristics to explain the overall meaningful use of the intervention and the four most appreciated intervention functions (Table 5). None of the explored patient characteristics (diagnosis, civil status, sex, education level, technical competence, and age) could significantly predict the overall meaningful use of the intervention or on person-centred dialogues by way of structured telephone support. Some patient characteristics (diagnosis, civil status, sex, and technical competence) could significantly predict specific intervention functions (Table 4). Stepwise multiple logistic regression identified which factors to include in the models most likely to predict meaningful use per intervention function (Table 6). All final models included one predictor. Rating technical skills as poor predicted the meaningful use of a direct telephone number to health professionals (aOR = 3.6, P = 0.014). COPD diagnosis predicted ratings on meaningful use to contact professionals by direct messaging through the digital platform (aOR = 3.5, P = 0.045). Living alone was a significant predictor of symptoms and daily health ratings on the digital platform as meaningful to use (aOR = 2.8 P = 0.044).

The integrated analysis on self-ratings with written comments and individual interviews resulted in four categories and 12 sub-categories identified to explain patients’ ratings of meaningful use. Non-meaningful use was described in two categories: Not in need and Deficiency in communication. Meaningful use was also formulated in two categories: Benefits in everyday life and A personal boost (see Table 7 for an overview of the categories and sub-categories). Quotes from both written comments and the individual interviews are provided in the results section to illustrate explanations of the ratings.

This study aimed to elucidate patients’ experiences of a remote PCC intervention (through a combined digital platform and structured telephone support) by deepening the understanding of, if, how and for whom the support contributed to meaningful use. The intervention proved to be an easily applicable and valued tool to support preventive measures in a person-centred manner. Most participants rated the overall intervention as meaningful to use. The intervention tended to be more meaningful for those diagnosed with COPD compared to those diagnosed with CHF. The main finding is that the structured telephone support contributed to a meaningful use of the intervention by most of the participants. The digital platform was reported as less meaningful to use by the majority of the participants, but some participants appreciated it, especially those with a COPD diagnosis or those living alone. Not being in need of support and deficiency in communication are circumstances which explained ratings of non-meaningful use whereas seeing benefits in everyday life or gaining a personal boost when engaging in the intervention contribute to meaningful use.

From a patient perspective, our findings deepen understanding of how, when and for whom a remote PCC intervention is meaningful to use. Our findings help clarify which aspects facilitate or hinder such use in supporting self-management of chronic conditions. Research that describes how remote support is provided to and experienced from the patient perspective is generally lacking particularly interventions that involve PCC [7, 20]. A limited number of studies have explored patients’ perspectives on their use of and engagement in remote interventions [10, 21, 22], and few studies have had PCC as their main theoretical basis [15, 23]. Thus, our findings provide key knowledge to support the future development and implementation of remote PCC which, to date, remains an under-investigated area [7, 20].

The structured telephone support seems to play a crucial role in contributing to meaningful use by facilitating the initiation of partnership and agreement of a health plan between health professionals and patients. The category A personal boost and its subcategories provide information on four intervention mechanisms which contributed to meaningful use by supporting health-planning and taking action (Being met with personal commitment, Seeing what I need and want, Setting a common course to follow and Finding strength for the next step). These four intervention mechanisms were predominantly initiated by the structured telephone support, and for some participants also promoted by the digital support. The identified intervention mechanisms are consistent with person-centred processes described in the literature [24, 25], and support Håkansson and co-workers’ [26] review on differences between patient- and person-centred interventions which concludes that PCC aimed at a meaningful life and patient-centred care at achieving functions. In the telehealth context, one RCT evaluating telephone support for people with COPD or CHF concluded that PCC could be delivered remotely but did not describe the process of how PCC was realised and if it was reported as meaningful by users [27]. Our study gives a practical example of how PCC could be applied remotely, and that the initiation of person-centred processes contributed to meaningful use.

Intervention mechanisms that enable relationships with health professionals and visualise symptoms to enhance self-awareness among patients have been reported as facilitators when implementing remote health care interventions [9]. The category Benefits in everyday life explained how both the digital platform and telephone support contributed to meaningful use by having easy access to a trustworthy professional contact and experiencing reduced feelings of stress which enabled dialogues where patients felt welcomed to initiate conversations and ask questions. This category also illustrated how documentation through self-ratings and health plans on the digital platform contributed to meaningful use by identifying both health resources and obstacles to maintaining health. Documentation transparency by providing access to shared health-planning and health-ratings via digital supports is described as a potential contributor to increase patient involvement [5, 28] and is also highlighted to meet the minimum requirement of PCC [25]. However, our results show that few participants rated the function of having access to the documentation of their health plan via the digital platform as meaningful. In contrast, the analysis of written comments and interviews show that meaningful use of the intervention was explained by the way the health plan was co-created and that the intervention provided prerequisites to mutual dialogues. One explanation for this finding could be that informal aspects of the partnership (e.g., personal contact and verbal agreements on the next step) are more important to patients then the formal aspects such as documentation of health planning. Our finding is congruent with a previous qualitative study [29] showing that patients valued actions leading to human connectedness above formalised aspects, although it also showed the value of having a documented health plan for some participants.

Our analysis also revealed barriers to meaningful use related to working remotely in general and specifically for person-centred practices. Deficiencies in communication and its sub-categories (Issues with technology inhibits contact, Lacking personal contact, Unexpressed aims and expectations) clarify which factors inhibited meaningful use and challenged PCC implementation. These findings confirm previous reports on limited access as the main obstacle to digital platform usage [30] and the lack of face-to-face contact in remote interventions [31, 32]. Our qualitative findings on communication barriers were congruent with our quantitative findings, showing a lower adoption of digital platform use than telephone support. Almost one in three participants had not used the digital platform and thus did not receive the intervention according to protocol [6].

The sub-category Unexpressed aims and expectations demonstrate that it was not always clear to patients how the remote PCC intervention could be used or its purpose. This lack of clarity could partially explain the low ratings of meaningful use on some of the digital platform functions (i.e., having shared access to health plans and following trend graphs of self-ratings). However, when applied, these digital platform functions were also described as key elements contributing to meaningful use as reported in our qualitative findings (Benefits in everyday life and A personal boost).

When timed well, the remote PCC intervention could be helpful to identify and support preventive actions to maintain health measure in people diagnosed with COPD or CHF [15]. However, our findings pinpoint people diagnosed with COPD and people living alone as target groups who find the support more meaningful to use. A possible explanation for higher ratings of meaningful use among people diagnosed with COPD could be that they have a greater need to use the remote PCC intervention because of a lack of support in conventional care [5]. This explanation is compatible with our qualitative findings on what contributes to meaningful use and the category “Not in need,” which reported experiences of non-meaningful use due to having Health under control or already experiencing Adequate care support. Outpatient heart failure clinics have been expanded during the past 10 years [33], whereas health care is not as well organised to support people with COPD to the same extent [5, 34]. Studies have also shown that remote interventions for people diagnosed with COPD should emphasise work in partnership, as a diagnosis of COPD is often associated with stigma and shame [5, 34, 35]. Our findings show that the remote PCC intervention was an easily applicable tool to bridge inequities in access to preventive care.

The analysis was derived from responses on ratings (n = 86) and comments (n = 44) on the questionnaire’s open-ended question as well as individual interviews, making it possible to integrate quantitative and qualitative findings, which strengthens the study’s credibility as the findings from both types of data collection methods confirm the results of the other [17]. One study limitation was the delay in distributing the process evaluation questionnaires that excluded the first 14 participants in the RCT intervention group. However, despite this limitation, the response rate in the process evaluation on quantitative measures was high (75%). The participants' characteristics and demographics were representative when compared to the intervention group as a whole (Table 3). Inclusion criteria for the interview study may have resulted in the participants following the intervention protocol more closely than the process evaluation group, which may have impacted the findings by providing more details on intervention use from people keen to use the remote PCC intervention. However, this fact should not only be regarded as a limitation but also as a strength because interviewing people with experiences of using the support provided explanations of both non-meaningful and meaningful use. Qualitative data was also collected from written comments covering explanations from both non-users and users of the remote PCC intervention which contributed different perspectives on meaningful use. After adding 12 individual interviews to deepen the analysis of preliminary categories developed from the written comments, no new patterns emerged in category development as categories and sub-categories were replicated, thus data was considered saturated [36]. Although PCC was a key-component in the design, we did not explicitly ask participants of how PCC contributed meaningful use as our aim was to evaluate the overall intervention. Future studies could benefit from exploring participants critical thinking on remote PCC. A further limitation is the small study groups. Hence, predictors on meaningful use should be interpreted accordingly as this limited the number of predictors that could be included in the multiple regression models.