“The citizen is stepping into a new role”—Policy interpretations of patient and public involvement in Finland

Involving patients and the public in healthcare decision‐making is on the policy agenda in several countries. The aim of our study was to describe and analyse the development of patient and public involvement from a policy perspective. We argue that the language of health policies can influence both the aims and the development of involvement methods. In this study health policy documents, which have guided the development of patient and public involvement in Finland have been analysed using methods of Membership Categorisation Analysis. This has enabled us to explore how health policy documents categorise patients and the wider public in relation to involvement and orientate the involvement activities in which people are able to participate. Different set of abilities, expectations, responsibilities and opportunities is attached to the categories of patient, risk group, service user, customer and expert. Health policy documents often equate involvement with choice making by service users and customers; or as involvement in service development by experts. In both of these cases, involvement is depicted as an individual activity that requires personal responsibility and specialist knowledge. Although involvement opportunities have overall increased, they are primarily available to people that are “participation ready” and able to adopt roles promoted in policies. Health policy documents produce one interpretation of involvement, nevertheless it is important that diverse groups of patients, the public and health professionals participate in the discussion and express their views, which may differ from those of policy makers.     

Reconciling the theory and reality of shared decision‐making: A “matching” approach to practitioner leadership

Shared decision making (SDM) evolved to resolve tension between patients’ entitlement to make health‐care decisions and practitioners’ responsibility to protect patients’ interests. Implicitly assuming that patients are willing and able to make “good” decisions, SDM proponents suggest that patients and practitioners negotiate decisions. In practice, patients often do not wish to participate in decisions, or cannot make good decisions. Consequently, practitioners sometimes lead decision making, but doing so risks the paternalism that SDM is intended to avoid. We argue that practitioners should take leadership when patients cannot make good decisions, but practitioners will need to know: (a) when good decisions are not being made; and (b) how to intervene appropriately and proportionately when patients cannot make good decisions. Regarding (a), patients rarely make decisions using formal decision logic, but rely on informal propositions about risks and benefits. As propositions are idiographic and their meanings context‐dependent, normative standards of decision quality cannot be imposed. Practitioners must assess decision quality by making subjective and contextualized judgements as to the “reasonableness” of the underlying propositions. Regarding (b), matched to judgements of reasonableness, we describe levels of leadership distinguished according to how directively practitioners act; ranging from prompting patients to question unreasonable propositions or consider new propositions, to directive leadership whereby practitioners recommend options or deny requested procedures. In the context of ideas of relational autonomy, the objective of practitioner leadership is to protect patients’ autonomy by supporting good decision making, taking leadership in patients’ interests only when patients are unwilling or unable to make good decisions.     

“Every structure we're taught goes out the window”: General practitioners' experiences of providing help for patients with emotional concerns'

Up to 40% of general practitioners (GP) consultations contain an emotional component. General practitioners (GPs) have to provide care with limited time and resources. This qualitative study aimed to explore how GPs care for patients experiencing emotional concerns within the constraints of busy clinical practice. Seven GPs participated in three focus groups. Groups were recorded, transcribed and analysed thematically. Three themes were identified. (a) Collaboratively negotiated diagnosis: How patients' emotional concerns are understood and managed is the result of a negotiation between patient and GP belief models and the availability of treatments including talking therapy. (b) Doctor as drug: Not only is a continuous relationship between GPs and patients therapeutic in its own right, it is also necessary to effectively diagnose and engage patients in treatment as patients may experience stigma regarding emotional concerns. (c) Personal responsibility and institutional pressure: GPs feel personally responsible for supporting patients through their care journey, however, they face barriers due to lack of time and pressure from guidelines. GPs are forced to prioritise high‐risk patients and experience an emotional toll. In conclusion, guidelines focus on diagnosis and a stepped‐care model, however, this assumes diagnosis is relatively straightforward. GPs and patients have different models of psychological distress. This and the experience of stigma mean that establishing rapport is an important step before the GP and patient negotiate openly and develop a shared understanding of the problem. This takes time and emotional resources to do well. Longer consultations, continuity of care and formal supervision for GPs could enable them to better support patients.     

Improving Quality and Safety of Care Using “Technovigilance”: An Ethnographic Case Study of Secondary Use of Data from an Electronic Prescribing and Decision Support System

Context

“Meaningful use” of electronic health records to improve quality of care has remained understudied. We evaluated an approach to improving patients’ safety and quality of care involving the secondary use of data from a hospital electronic prescribing and decision support system (ePDSS).

Methods

We conducted a case study of a large English acute care hospital with a well-established ePDSS. Our study was based on ethnographic observations of clinical settings (162 hours) and meetings (28 hours), informal conversations with clinical staff, semistructured interviews with ten senior executives, and the collection of relevant documents. Our data analysis was based on the constant comparative method.

Findings

This hospital''s approach to quality and safety could be characterized as “technovigilance.” It involved treating the ePDSS as a warehouse of data on clinical activity and performance. The hospital converted the secondary data into intelligence about the performance of individuals, teams, and clinical services and used this as the basis of action for improvement. Through a combination of rapid audit, feedback to clinical teams, detailed and critical review of apparent omissions in executive-led meetings, a focus on personal professional responsibility for patients’ safety and quality care, and the correction of organizational or systems defects, technovigilance was—based on the hospital''s own evidence—highly effective in improving specific indicators. Measures such as the rate of omitted doses of medication showed marked improvement. As do most interventions, however, technovigilance also had unintended consequences. These included the risk of focusing attention on aspects of patient safety made visible by the system at the expense of other, less measurable but nonetheless important, concerns.

Conclusions

The secondary use of electronic data can be effective for improving specific indicators of care if accompanied by a range of interventions to ensure proper interpretation and appropriate action. But care is needed to avoid unintended consequences.     

“Missing Milestones”

Missing milestones are known to be a normal variant of development. The purpose of our study is to find if missing milestones always lead to normal development?

METHODS

This is a prospective case study on seven patients referred for motor developmental problems from July 1997 to February 1998 and then followed over a 2-year period. On each attendance, the multi-disciplinary team assessed children

RESULTS

We present a case series of seven children with “missing motor milestones”. Six of the seven, had tactile defensiveness but absent parachute reflexes on presentation

At the end of the two year period, 3 infants had normal development (Group I). One was discharged after 7 months. The second one had speech problems most likely secondary to her bilateral serous otitis media, with no other developmental problems. The third child acquired age appropriate milestones before the care was transferred to another hospital. Of the four in Group II, three developed global developmental delay and the fourth was diagnosed to have multiple cavernous haemangiomata in the brain. The pre-school alert panel was alerted for two of them possibly needing future help in school

Five of the seven children in our study were still being followed up after two years

CONCLUSIONS

Missing milestones in a subject can be a benign variation of normal motor development. However, they may also be the first sign to appear in children with neuro-developmental disorders

Tactile defensiveness may be the most useful early sign to enable the early diagnosis of non-weight bearing children with 'missing milestones'     

‘You certainly don't go back to the doctor once you've been told, “I'll never understand women like you.”’ Seeking candidacy and structural competency in the dynamics of domestic abuse disclosure

A reticence on the part of women to disclose domestic abuse (DA) to family doctors, allied to front‐line responses that do not always reflect an understanding of the structure and dynamics of DA, hampers the provision of professional support. Using data from 20 qualitative interviews with women who have experienced DA, this paper explores their discourse about interacting with family doctors. It is the first study to explore firsthand accounts of these interactions through Dixon Woods’ lens of candidacy. It finds disclosure to be inherently dynamic as a process and expands the candidacy lens by considering the: (i) conflicting candidacies of victims and perpetrators; (ii) diversionary disclosure tactics deployed by perpetrators and, (iii) the potential role of General Practitioner (GPs) in imagining candidacies from a structural perspective. By exploring the dynamics of disclosure through the concept of ‘structural competency’ it finds that in encounters with women who have experienced abuse GPs ineluctably communicate their views on the legitimacy of women's claims for support; these in turn shape future candidacy and help‐seeking. Greater GP awareness of the factors creating and sustaining abuse offers the potential for better care and reduced stigmatisation of abused women.