"Care is not care if it isn't person‐centred": A content analysis of how Person‐Centred Care is expressed on Twitter

Abstract Background Person‐Centred Care (PCC) has been the subject of growing interest in recent decades. Even though there is no conceptual consensus regarding PCC, many health‐care institutions have implemented elements into their care. Objective This study aimed to investigate the PCC topics presented by different stakeholder groups on Twitter and to explore the perceptions of PCC within the content of the tweets. Method Tweets with mentions of PCC in various translations were collected through a Twitter Application Programming Interface in October 2019. The tweets were analysed using quantitative and qualitative content analysis. Results Five stakeholder groups and ten topics were identified within 1540 tweets. The results showed that the PCC content focused on providing information and opinions rather than expressing experiences of PCC in practice. Qualitative content analysis of 428 selected tweets revealed content on a vision that all care should be person‐centred but that the realization of that vision was more complicated. Conclusions Twitter has shown to be a quick and non‐intrusive data collection tool for uncovering stakeholders' expressions concerning PCC. The PCC content revealed that stakeholders feel a need to 'educate' others about their perception of PCC when experiences and real‐life applications are missing. More action should be taken for the implementation of PCC rather than circulating PCC vision without operationalization in care. Public Contribution The public provided the data through their posts on Twitter, and it is their perception of PCC that is studied here.

containment and quality of care. 2 PCC is directed at improving the health and recovery process of patients and improving the work environment of health-care professionals by forming a partnership between the patient/relatives and the health-care professionals.
PCC constitutes an approach to health care based on ethical principles, which are summarized in three core components: inclusion of patients' narrative, co-creating a health plan and monitoring that health plan. 1 Evidence from research studies regarding PPC outcomes is substantial. 3 Nevertheless, real-world implementation of PCC is lacking, which could be because its conceptualization and perception are still poorly understood. 4,5 For example, there is an array of different concepts and terms for PCC that are often used interchangeably, for example Patient-Centred Care, Individual-Focused Care and Person-Centred Care. [5][6][7] Also within PCC itself, the range of definitions and practices claiming to be person-centred is broad, and the need for stringency within the concept of PCC has been highlighted. 5,[8][9][10][11][12] A recent review of PCC identified three pillars that are not mutually exclusive, yet still different: PCC as emphasizing personhood, PCC as a partnership and PCC as an overarching holistic approach that comprises many different activities, principles and enablers such as self-care and decision making. 13 Hence, while PCC seems to be a crucial component in qualitative health care, it appears to be both perceived and experienced differently depending on, for example, different stakeholders and context.
Twitter, as a social network site, is well-positioned to explore these perceptions and experiences because it is rapidly becoming a key resource for opinion and policymakers, patient organizations and industry, as well as public health surveillance. 14 This social network site contains vast amounts of freely available, user-generated microblogs and reflects unprompted opinions on public health matters. Twitter provides real-time monitoring on public health topics in an efficient and automated manner. Eysenbach defines this monitoring as 'Infoveillance' which is 'the science of distribution and determinants of information in an electronic medium, specifically the Internet, or in a population, with the ultimate aim to inform public health and public policy'. 14(p2) Infoveillance may have many benefits to the field of PCC research as it could provide new insights into the perceptions of PCC people find most important to share with their social network.
Twitter provides many single entries and hardly contains any context to the post. Therefore, most early work on Infoveillance used elaborate models to analyse patterns in the use of the Internet through automated queries. 14,15 However, the potential for applying social research methods has gained more attention in recent years as, although meagre, the microblogs contain useful information on the chosen topic and the Twitter user posting the tweet. 16 The data provide a slice of the general population (with mostly affluent young users) and allows for many different voices to be included in the study without having to contact them individually. 17 Tweeting can be considered a performative platform to self-identify. 18,19 By interacting or simply spreading posts, a performance of self is provided for an imagined audience. 20 Therefore, the analysis of the PCC contents of the tweets offered both a better understanding of how PCC is expressed by stakeholders and an indication of why the tweet was made.
The purpose of this study was twofold: to investigate the PCC topics presented by different stakeholder groups on Twitter and to explore the perceptions of PCC within the content of the tweets.

| Data collection
The PCC-related Twitter search was conducted in the Twitter

| Content analysis
For the content of the tweets, we applied the content analysis method as described by Graneheim & Lundman. 22 The tweet's con-  In the qualitative content analysis, the tweets were further coded to interpret the meaning within their topic. These topics can be understood as the latent content of the text. 22

| Ethical considerations
Twitter is a public platform in which the data are freely available.
Upon signing up for Twitter, there is a built-in application that acquires consent for the use of the individuals' feed by third parties.
Anyone can access and use the tweets provided by the individual on the Twitter social network site, which prompts many studies to refrain from mentioning ethics at all. 15 Several papers did discuss the potential for social media, such as Twitter, to be damaging to the individual and presented guidelines to overcome such difficulties. [23][24][25] Following these guidelines surpasses the need to inform the individuals of their participation and to receive consent. 26 The tweets were directly copied from the API programme to preserve the expression of the author, which makes it possible for the tweets to be found when searched for on Twitter, but ensures transparency of the used data. Yet, this paper followed the general guidelines for preventing direct harm or identification by replacing all usernames and in-text references by hashtags.
Alternative references (e.g. @'ambulance service') were given when it was vital for the understanding of the tweet. it impossible for the API programme to assign a language and for us to analyse objectively. As none of the tweets had a geolocation identifier, it is unclear from which country, region or city the tweets originated.

| Descriptive quantitative analysis
After removing those tweets not related to the concept of PCC or exhibiting too little information, the open coding of the 1540 remaining tweets shaped ten topics. We identified five groups of stakeholders within the tweets: individuals (i.e. unspecified Twitter users), health-care facilities (directly providing care, e.g. hospitals and elderly care homes), health-care professionals (e.g. doctors and nurses), organizations & companies (any enterprise connected to but not directly providing care, e.g. WHO, technology companies and news outlets) and academic-based sources (e.g. scientists and universities).

| Qualitative content analysis
This section concerns the second part of the aim, which aimed to explore the content of the PCC tweets and required Twitter content that revealed a perception of PCC. Therefore, most topics  Table 2). Half of the tweets (n=127) focused on 'the vision of PCC'. These tweets represented a desire for a more PCC approach, which was often explicitly sought for groups that can be made vulnerable, such as the elderly, people with disability and the LGBT+ community.

| PCC is challenging to realize
One hundred seventy-five (41%) tweets had a more critical perspec- The last sub-theme pointed out the lack of access (25% and n=44) to individual PCC encounters. A number of these tweets underscored that health-care providers said they provide PCC but that the reality was different and that patients did not actually have access to PCC.

| Methodological limitations
Although this study complements previous research on PCC, there are several limitations to Twitter-based research. Contrary to classic data collection methods, the tweets are data-driven, which leaves no space to ask for clarification. The Twitter API only collects the tweets with the search terms and could be snippets within conversations. Therefore, 31 tweets could not be adequately analysed for lack of context. Besides, we solely analysed tweets with the concept of ´Person'-centred care, which may cause tweets that meant PCC but used different terms to be excluded. Lastly, the tweets were only collected for one month, and the data may, therefore, be skewed towards the events and the active Twitter users of that particular month. However, this limitation occurs with any given time frame.

| CON CLUS ION
This is the first study into the representation of Person-Centred Care on Twitter. The results showed that the PCC content focused on providing information and the stakeholders' opinions rather than contributing to the PCC discussion or expressing their experiences in practice. The meaning in the tweets revealed the appeal of PCC but that it is challenging to execute in practice and implementation needs careful consideration. The overall perception is that 'quality' care cannot be provided if it is not person-centred, but the reality seems to be that we still just talk and dream about PCC, rather than practise and experience it.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available upon reasonable request from the corresponding author.