Shane Doheny

Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom.

Purpose:To ascertain whether and how recontacting occurs in the United Kingdom.Method:A Web-based survey was administered online between October 2014 and July 2015. A link to the survey was circulated via an e-mail invitation to the clinical leads of the United Kingdom’s 23 clinical genetics services, with follow-up with senior clinical genetics staff.Results:The majority of UK services reported that they recontact patients and their family members. However, recontacting generally occurs in an ad hoc fashion when an unplanned event causes clinicians to review a file (a “trigger”). There are no standardized recontacting practices in the United Kingdom. More than half of the services were unsure whether formalized recontacting systems should be implemented. Some suggested greater patient involvement in the process of recontacting.Conclusion:This research suggests that a thorough evaluation of the efficacy and sustainability of potential recontacting systems within the National Health Service would be necessary before deciding whether and how to implement such a service or to create guidelines on best-practice models.Genet Med 18 9, 876–881.

Co-operation and conflict under hard and soft contracting regimes: case studies from England and Wales

BackgroundThis paper examines NHS secondary care contracting in England and Wales in a period which saw increasing policy divergence between the two systems. At face value, England was making greater use of market levers and utilising harder-edged service contracts incorporating financial penalties and incentives, while Wales was retreating from the 1990s internal market and emphasising cooperation and flexibility in the contracting process. But there were also cross-border spill-overs involving common contracting technologies and management cultures that meant that differences in on-the-ground contracting practices might be smaller than headline policy differences suggested.MethodsThe nature of real-world contracting behaviour was investigated by undertaking two qualitative case studies in England and two in Wales, each based on a local purchaser/provider network. The case studies involved ethnographic observations and interviews with staff in primary care trusts (PCTs) or local health boards (LHBs), NHS or Foundation trusts, and the overseeing Strategic Health Authority or NHS Wales regional office, as well as scrutiny of relevant documents.ResultsWider policy differences between the two NHS systems were reflected in differing contracting frameworks, involving regional commissioning in Wales and commissioning by either a PCT, or co-operating pair of PCTs in our English case studies, and also in different oversight arrangements by higher tiers of the service. However, long-term relationships and trust between purchasers and providers had an important role in both systems when the financial viability of organisations was at risk. In England, the study found examples where both PCTs and trusts relaxed contractual requirements to assist partners faced with deficits. In Wales, news of plans to end the purchaser/provider split meant a return to less precisely-specified block contracts and a renewed concern to build cooperation between LHB and trust staff.ConclusionsThe interdependency of local purchasers and providers fostered long-term relationships and co-operation that shaped contracting behaviour, just as much as the design of contracts and the presence or absence of contractual penalties and incentives. Although conflict and tensions between contracting partners sometimes surfaced in both the English and Welsh case studies, cooperative behaviour became crucial in times of trouble.

Contracts in the English NHS: Market levers and social embeddedness

Abstract This paper draws parallels between the market trend in the English NHS and Polanyi’s (1957) The Great Transformation: The political and economic origins of our time, Beacon Press: Boston (originally published in 1944 in the United States as The Great Transformation, Rinehart: and Co: New York, and in 1945 in England as Origins of our time, Gollancz: London) account of how the rise of markets provokes a self-protective counter-reaction that tries to re-embed economic relations in social relations. We report findings from a qualitative study of NHS contracting, which examines the recent move to harder-edged contracts with greater use of financial penalties and incentives. In practice, use of these techniques tended to be confined to nationally-mandated sections of the contract rather than emerging from local bilateral agreements, and when things went wrong the parties relied more on cooperative behaviour than on the provisions of the contract to find solutions. Making the current contracting system work depended more on existing relational networks than on the incentive structures created by recent ‘marketisation’ initiatives, but the inability of the market to evolve as expected has encouraged policy makers to publish plans for further radical reforms.

Recontacting in clinical genetics and genomic medicine? We need to talk about it

THE PROBLEM An editorial in the AJMG,1 which accompanied the first systematic review conducted on the topic,2 suggested that advances in nextgeneration sequencing technologies and the volume of genomic information they deliver are leading clinicians to consider recontacting former patients. Examples might be: (a) to discuss whether more sensitive testing could now provide a diagnosis or health prediction, which had not previously been possible; (b) to review the evidence for particular genetic findings playing a part in the patient’s disease; or (c) to revise the interpretation of a genetic variant previously identified. As the Otten et al.2 systematic review shows, there is a perceived need for guidance in this area. However, it is not clear whether a standard protocol or consensus guidelines are necessary, or indeed whether a duty to recontact exists at all.

Recontacting in clinical practice: the views and expectations of patients in the United Kingdom

This paper explores the views and expectations of patients concerning recontacting in clinical practice. It is based on 41 semi-structured interviews conducted in the United Kingdom. The sample comprised patients or parents of patients: without a diagnosis; recently offered a test for a condition or carrier risk; with a rare condition; with a variant of unknown significance – some of whom had been recontacted. Participants were recruited both via the National Health Service (NHS) and through online, condition-specific support groups. Most respondents viewed recontacting as desirable, however there were different opinions and expectations about what type of new information should trigger recontacting. An awareness of the potential psychological impact of receiving new information led some to suggest that recontacting should be planned, and tailored to the nature of the new information and the specific situation of patients and families. The lack of clarity about lines of responsibility for recontacting and perceptions of resource constraints in the NHS tended to mitigate respondents’ favourable positions towards recontacting and their preferences. Some respondents argued that recontacting could have a preventative value and reduce the cost of healthcare. Others challenged the idea that resources should be used to implement formalised recontacting systems – via arguments that there are ‘more pressing’ public health priorities, and for the need for healthcare services to offer care to new patients.

Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics

Technological advances have increased the availability of genomic data in research and the clinic. If, over time, interpretation of the significance of the data changes, or new information becomes available, the question arises as to whether recontacting the patient and/or family is indicated. The Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), together with research groups from the UK and the Netherlands, developed recommendations on recontacting which, after public consultation, have been endorsed by ESHG Board. In clinical genetics, recontacting for updating patients with new, clinically significant information related to their diagnosis or previous genetic testing may be justifiable and, where possible, desirable. Consensus about the type of information that should trigger recontacting converges around its clinical and personal utility. The organization of recontacting procedures and policies in current health care systems is challenging. It should be sustainable, commensurate with previously obtained consent, and a shared responsibility between healthcare providers, laboratories, patients, and other stakeholders. Optimal use of the limited clinical resources currently available is needed. Allocation of dedicated resources for recontacting should be considered. Finally, there is a need for more evidence, including economic and utility of information for people, to inform which strategies provide the most cost-effective use of healthcare resources for recontacting.

Public Contracts as Accountability Mechanisms: Assuring quality in public health care in England and Wales

Abstract Contracting in the public sector is designed to enhance the accountability of service providers to their funders. The idea is that quality is improved by the use of service specifications, monitoring of performance and imposition of contractual sanctions. Socio-legal and economic theories of contract indicate that it will be difficult to make and enforce contracts to achieve this. The results of a study of National Health Services contracting in England and Wales are reported. We conclude that contracts alone are not sufficient to improve accountability – collibration of various regulatory measures (including more hierarchical mechanisms such as performance targets) is required.

Dimensions of responsibility in medical genetics: exploring the complexity of the “duty to recontact”

Discussion of a “duty to recontact” emerged as technological advances left professionals considering getting back in touch with patients they had seen in the past. While there has been much discussion of the duty to recontact as a matter of theory and ethics, there has been rather little empirically based analysis of what this “duty” consists of. Drawing on interviews with 34 professionals working in, or closely with, genetics services, this paper explores what the “duty to recontact” means for healthcare professionals involved in genetics. Using a discourse analytic framework, the paper identifies three system generated discourses on recontact (governance, legal and responsibilizing discourses) and three lifeworld discourses (situating recontact as a formal duty; more loosely as an obligation; and as a personal sense of responsibility). In summary, the paper shows that the “duty” to recontact involves a complex interplay of system responsibilities with professional duties, responsibilities and obligations.