Advocating a person-centered care approach to drug safety

KEYWORDS:

• Action research
• drug safety
• narratives
• patient engagement
• person-centered care
• person-centered outcomes

1. Introduction

Person-centered care constitutes a rational and ethical framework to improve patient health outcomes including drug safety. Yet the term ‘person-centered care’ is riddled with various interpretations within the healthcare literature. In its narrowest form, the term focuses on the patient, and occasionally their families, as consumers of medications prescribed by healthcare professionals (HCPs). This interpretation of the patient’s role however does not recognize the importance of power relationships and the impact of patient values on preventing and addressing adverse drug reactions (ADRs). Healthcare professionals on the other hand, are expected to ‘work’ with the patients’ beliefs, through an understanding of their perspectives and the meanings that they assign to their experiences.

Person-centered care in relation to medication management, is an evolving field which can contribute both in a regulatory and decision-making context for the safe use of medications at the clinical level. However, the paucity of research targeting person-centered care in relation to drug safety needs to be addressed. A Pubmed search for original research in English from 2010 to 25 November 2020 using the query ((person-centered care OR person-centred care) AND (framework OR model)) AND (drug OR medication OR medicine) AND (safety) NOT (review)) extracted only 5 studies of interest.

This editorial aims to discuss the impact of person-centered care on drug safety and to present recommendations for the future direction of research in this field.

1.1. Person versus patient-centered care

Person-centered care is often used interchangeably with patient-centered care. The latter implies unequal power relationships where HCPs based on their medical expertise, ‘tell’ patients what medication to take. Conversely, person-centered care implies dialogue and an equal distribution of ‘power’ in relationships encompassing an active process of negotiation, whereby patients’ beliefs (e.g., including perceived benefits and risks of medication) form a basis for decision-making. It also acknowledges the person’s autonomy and their right to self-determination in making their own informed choice in relation to medication management.

Through the application of effective person-centered practice, various outcomes can be achieved including: a good care experience; involvement in one’s own care, a sense of well-being and the existence of a healthful culture (i.e., having collaborative staff relationships, shared decision making and support for innovative practices) [1]. Such outcomes should not be confused with structured and standardized patient-reported outcome measures, although the latter undoubtedly also play a role, albeit a different one, in forefronting patient perspectives on health and disease in biomedical research.

1.2. A case study

Non-adherence is often identified as a primary reason behind therapeutic failure in several conditions, including schizophrenia [2], secondary prevention of cardiovascular diseases and respiratory diseases, with similar factors playing a role in drug safety. This will be exemplified in the following case study of Mrs. E, an older woman, with an exacerbation of chronic obstructive pulmonary disease (COPD) for which her physician prescribed furosemide. Mrs. E describes her physician saying, ‘you need to take these – they will make you feel better.’ No further information was given, including timing of dose, and potential ADRs to expect.

Mrs. E took one furosemide tablet at home the next morning and promptly stopped treatment after developing polyuria, a common ADR of diuretics. The polyuria itself was not the reason for discontinuation, but her need to frequently climb a flight of stairs to the bathroom, inducing significant fatigue and malaise. For the next five days, Mrs. E did not take any more furosemide tablets, leading to the worsening of her COPD, her global clinical status, and her quality of life. Her daughter called the physician who changed their approach to a person-centered one, where the patient-physician dyad could dialogue meaningfully.

The physician realized the indication for prescribing furosemide had not been made explicit, nor the potential ADRs, including polyuria. However, the physician did not know or foresee the impact of the ADR on Mrs. E’s adherence and consequently, on the management of her COPD. Following discussion, Mrs. E understood the medical need to continue the drug. The physician also understood that managing the polyuria was critical for her to adhere to treatment and suggested taking the furosemide tablet after lunch rather than in the morning. This enabled Mrs. E to go upstairs and rest in her bedroom, within easy access of the nearby bathroom. In this manner she could now cope effectively with the polyuria and this impacted positively on her well-being. After the second consultation Mrs. E stated that she wanted her need to be as active and independent as possible, to be acknowledged and prioritized. Polyuria, although not medically serious, impaired her ability to self-care and was the key reason that she discontinued treatment.

Hence, when the overall medical care of a patient takes into account their wellbeing, including their needs, beliefs and values, the clinical decisions which are taken become more feasible and are more likely to be successful [1].

1.3. Challenges in evaluating drug safety

Maximizing drug safety is of increasing interest, as demonstrated by the proliferation of research on the topic. However, most evaluations of medication safety focus on outcomes such as patient readmissions, medication errors and inappropriate medication use [3,4]. Although these address potential harm in patients, they do not always provide an in-depth perspective to complex phenomena in context. For instance, first person narratives of persons with mental illnesses often describe their lack of involvement in care decisions. Rather they are viewed ‘in terms of their problems, symptoms and deficits rather than as citizens with strengths and areas of competence’ [5]. This can marginalize patients due to their vulnerability (e.g., mental health challenges), sociodemographic (e.g., educational level), cultural or economic status, with repercussions on their ability to access and successfully negotiate medical treatment and other welfare services.

2. Expert opinion

Research examining patient engagement and drug safety predominantly features quantitative descriptive studies using surveys [6]. Yet, there is a dearth of contextual research regarding patient perspectives relating to safer care [7]. Hence, the need to include the ‘voice of the patient’ as a complementary addition to established quantitative research designs, that would subsequently impact on the quality and relevance of research findings [8]. Qualitative narrative designs can explore patient needs and concerns, including those of marginalized communities having mental health, cognitive and communication impairments who run an increased risk of ADRs [9]. Patient perspectives are of particular relevance considering the positive correlation between recognizing the importance of drug safety engagement and actively engaging in its management [6]. For instance, patient beliefs that drug safety is the HCPs responsibility, and fears of reprisals on questioning HCP authority, negatively impact the patient’s willingness to engage in drug safety management [4].

Understanding needs and concerns within the patient-HCP dyad is also of importance, as discordant beliefs may undermine the patient’s willingness to engage in drug safety management [7]. A mixed-method study [10] explored the use of medication lists by patients as a means of mitigating information loss across healthcare settings. The first phase of the study consisted of two focus groups with 20 patients (both users and non-users of medication lists) and informal carers, 16 semi-structured interviews with HCPs and 60 semi-structured interviews with patients using diverse medication lists (e.g., digital, paper tools). The quantitative phase incorporated examining the usability of both digital and paper tools in editing the list of medications taken by the patient.

Findings suggest that all stakeholders endorse medication lists as enhancing drug safety, particularly in emergencies and transitions of care through: an identification of potential drug interactions; by facilitating communication about medicines; in reminding patients to take/reorder their medicines and improving medicine reconciliation. However, although many persons carried information about their medicines, these were only produced when professionals made enquiries for them. Moreover, discordant beliefs were identified relating to the content of such lists, with the majority of HCPs requesting information about the purpose of medications being taken, whilst patients perceived that professionals should be knowledgeable in this regard.

A further approach, namely participatory methodologies such as action research, can also be used to explore person-centered care and drug safety, within a complex healthcare setting. This approach explores the dynamic world of practice, through an initial process of ‘culture identification’. In one such study a person- centered model of clinical pharmacy support for community nurses and community-dwelling older people was developed [11]. These older persons were referred to a home nursing service due to an increased risk of ADRs attributable to their declining health and cognitive function. In-depth interviews and focus groups with the various stakeholders (e.g., patients, informal carers- when relevant, community nurses, general practitioners and community pharmacists) before and during the development of the model and during the implementation phase were conducted. Notes from community nurses’ clinical meetings and de-identified case notes for selected clients, were also used to generate a discussion about the model, hence identifying any gaps in medication management processes. A multidisciplinary reference group further ensured that the model implemented met the stakeholders’ needs and concerns. The new model formulated facilitated communication between the various stakeholders, enabling timely access to clinical pharmacist advice whilst addressing medication issues.

For a person-centered care approach to drug safety, we contend that aside from merely recognizing established designs incorporating human factors and attitude measurement, there is the need for research that focuses on individual narratives of stakeholders that potentially impact on health decisions. This incorporates new ways of obtaining contextual information on patient well-being, experience and involvement in drug safety management. The information generated is pivotal in empowering HCPs in negotiating effective person-centered relationships to improve medication safety, as well as guiding more effective planning and system responsiveness to enhance patient engagement.

Declaration of interest

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Reviewer disclosures

Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Additional information

Funding

This paper was not funded.