Defining and disambiguating patient-centredness
Summary: Today, we are coming to recognise that patient-centredness is fundamental to the nature of medicine. It was integral to medical practice prior to the scientific era, but its loss began in the move towards technical practice that started in the 17th century and the professionalisation of the social roles of physician and surgeon in the 18th century onwards. A century later, its loss became evident and it began to emerge again (Putnam, 1899), boosted by the development of nursing but struggling to cope with reductionist approaches in science and the rapid development of technology. In the latter half of the 20th century, with an expansion of identity-politics, patient-centredness was rediscovered as an equally essential aspect of medicine rather than as an alternative to quasi-scientific medical practice. What is patient-centredness, what is it not, and what is its potential? Our conclusions in this paper are based on a critical review of the literature on patient-centredness, of which the appended Bibliography forms a small sample with some key references.
The experience of long-term diagnosis with human immunodeficiency virus: A stimulus to clinical eupraxia and person-centred medicine
The biopsychosocial challenges of living with human immunodeficiency virus (HIV) have changed over time and they dictate the need for relevant medical services. The meaning of an HIV diagnosis has moved from a terminal to a manageable condition with the development of antiretrovirals, bringing profound changes to the experience of living with HIV and the meaning and use of diagnostic labels. Six biological stage-related categories in the literature of psychological medicine of HIV are critiqued. Long-term HIV highlights the inadequacy of physician-centred, acute-care medicine in chronic illness and its exclusion of preventive, psychological and rehabilitative modalities. ‘Eupraxia’ is presented as a conceptual framework for chronic care medicine, referring to best practice, wellbeing, best interests, and (public) welfare, through facilitated but collaborative approaches. A public-centred service model is proposed, using idiographic assessment and treatment by clinicians as patient delegates (proxies), monitoring joined-up care, providing group-based biopsychosocial treatment, facilitating autonomous and self-managing behaviour by the public, removing professional and practice hierarchies, and implementing real-time clinical and managerial accountability with public ownership and involvement. This model is superior in its health- and cost-effectiveness but can only work within a nationalized system that focuses equally on standardized outcomes and evidential and personalised health-outcomes.
Published: Chronic Illness 2, 311–320
Participative medical governance in the delivery of health-effective medical services
Summary: This paper puts forward a model of participative medical governance. It builds upon two other models developed by the Tuke Institute:
- a model of biopsychosocial medical services framed by a personalised assessment of illness, which is used to bench-mark individual medical outcomes that focus above all on health-effectiveness—i.e., helping the ill to get well and stay well long-term
- a model of measurement that relies on scientifically validated methods to determine if and how a medical service is being health-effective, thereby ensuring a valid evidence-base for medical governance.
Medical governance is required to ensure that a medical service remains health-effective and delivers services first and foremost to the public rather than to its providers. This model of participative medical governance specifies a robust system by which the public can ensure that information on health-effectiveness is used to ensure quality of service and it relies on the public’s participation at all gradations of service, from the patient and the family caring for the patient all the way out to national policy, in a horizontal framework. Importantly, this model provides the means by which to identify at an early stage the points where intervention is necessary with poorly performing clinicians and administrators, so as to protect the public’s health and prevent malpractice.
Securing health-effective medicine in practice: A critical perspective on user-driven healthcare
The movement for public participation in medical practice and its governance (‘participative medicine’) lacks an understanding of the historical and theoretical contexts within which it has emerged. This paper discusses the problems with physician-centred medicine (previously called ‘the medical model’), administrator-centred medicine (‘managed health-care’), patient-centred medicine, and participative medicine. The concept of health-effectiveness of medical services is emphasised as fundamental in an applied, critical theory of medi-cal practice that equates health-effectiveness with pro-social medical services. The critical theory provides a framework for understanding the movement’s purpose, its misuse by consumerist methods, and the problems when medicine is delivered by pro-market or provider-centred systems, as shown most notably in the Bristol Royal Infirmary Inquiry by the British government. The paper outlines the Tuke Institute model of health-effective services, secured by participative medical practice and its governance and integrated with trans-lational science. Together, the Tuke Institute model and the critical theory provide a scientific framework by which to determine the health-effectiveness of different models of practice through properly scientific research, indicating the necessity of studying models of practice as complex interventions.
Published: International Journal of User-Driven Healthcare, 1(2), 1-15
The importance of integrated and participative health-services to public health in HIV
Summary: Translating the following issues into practice is key to an effective integration of clinical, community, and public health-services:
- HIV is an infectious, behaviourally-driven pandemic. Its acquisition, course, and effects are influenced or mediated significantly by behaviour.
- Both clinical and public health-services need to address behaviour to achieve the best possible health-outcomes.
- As clinical and public health’s goals are the same (i.e., health), their outcomes should be the same and they should exploit common aspects and methods.
- As health is biopsychosocial, not just biological, both clinical and public health-services need to be biopsychosocial.
- Integrating biological, behavioural, and social health-services clinically achieves optimal health-outcomes. It also promotes public health-outcomes.
- Clinical health-services are a key point of intervention for people with HIV and at-risk of HIV-infection yet clinical health-services are inadequately utilised for the delivery of public health’s outcomes.
- Linking clinical health-services with community-based organisations increases significantly the health-effectiveness of clinical services as well as affecting public health’s outcomes.
- The empowerment of the individual and community through participation in the design and delivery of services is a key requirement of such effectiveness. This promotes ownership of solutions to health-problems, creates generalisable health-protective skills, protects rights, enables responsibilities, and promotes healthy community-expectations and standards.
- These observations were evident in the era before 1996. We now have even better technologies to achieve these outcomes, but we use them less than before 1996.
- Reducing patients to dependent consumers — whether in physician-centred clinics or in community-focused organisations — disempowers patients and promotes public health-problems. Solutions that are not owned by the affected patient or the affected community, but are simply delivered to them, are both poorly effective and counter-productive.
- Empowerment enables health-promoting behaviours and a supportive social context, which happens most effectively through clinical services that use behavioural medicine. Behavioural medicine translates clinical health-outcomes to public health’s outcomes in behaviourally-driven illnesses such as HIV.
On these bases, there are three recommendations:
- Clinical health-services should be integrated, incorporating both behavioural medicine and social medicine with biological medicine, in order to link up with and augment public health’s outcomes.
- Modifying health-behaviours and community-expectations about behaviours and services require both clinical and community-based behavioural medicine. This should be implemented in all clinics as a primary interventional modality and linked with community-based (not -focused) interventions.
- Patient-participation should be facilitated at all levels within the clinic and through integration with community-based (rather than community-focused) organisations. Solutions that are not owned by the affected patient or community, but are simply delivered to them as consumers, are both poorly effective and counter-productive.
An index of health-services’ effectiveness in HIV: A discussion-document
This is a simply a screen-grab of a page from a previous version of the website proposing an index as a measure of the degree to which health-services are effective in helping people maintain or resume a normal, healthy, daily life. This is a universally relevant Index that it would be ideal to pilot in the area of HIV, one of the chronic conditions most obviously influenced by a complex interaction of physical, mental, behavioural, and social issues. If HIV is not your field of interest, please consider it in the light of other chronic conditions.[No ID]
Evidence submitted to the House of Lords’ Select Committee on HIV and AIDS in the UK
Summary: HIV-related illness in the UK continues to be a significant burden to the public in terms of its financial, social, and personal costs. Despite the obvious fact that the HIV pandemic is driven by behaviour, expertise in behavioural science and behavioural medicine is inadequate or even absent in all areas of policy and service-delivery, and policy-setting is often a function primarily of political considerations within professions or provider-organisations, with the evidence-base informing these as a secondary concern.
There is also a primary problem in the lack of public participation in policy-setting, service-delivery, and governance, which relates to the themes common across all problem-areas: of complacency, a loss of vision, and a lack of leadership, particularly fresh leadership. This submission consists of an expert opinion that identifies a number of problems and both individual and systemic solutions thereto. These include the development of:
- an organisation that can represent the interests of people with HIV in terms of medical (including social) and scientific services delivered on behalf of people with HIV to people with HIV
- Health-Outcome Delivery Standards for medical services, so that the health-effectiveness of medical services can be measured in reference to how they help people with HIV live healthy and productive lives
- integrated medical services in reference to Health-Outcome Delivery-Standards that address the comprehensive physical, mental, and social health-needs of people with HIV, facilitated by case-management, to which behavioural medicine is key and which have been shown to be cheaper than the current physician-centred model
- a new framework for HIV prevention, focusing on health-effectiveness and the measurement of health-outcomes in both those with HIV and those at risk for infection
- a common and consistent message and approach for public education about HIV, to avoid the systemic problems inconsistent messages have caused to date
- new means of public participation so as to ensure representativeness of solutions
- a review of the representativeness of civil and provider-organisations in service-delivery generally and in medical practice and in scientific research in particular.
- a blue-print for translational science in HIV research so as to ensure the validity and value of funded research done for the public benefit, including a system for surveillance of illness-burden and health-outcomes in HIV treatment
- a coherent policy on criminalisation that might shift it from criminalising HIV-transmission to criminalising disability-discrimination
- a strategic 10-year plan for a coherent, national response to HIV in the UK.
These solutions would facilitate great progress towards a modern and cost-effective national response to HIV in the 21st century and refresh the vision and model that HIV provided historically for the response to other costly chronic illnesses that burden society today, including breast cancer and neurological disorders.
The Tuke Institute’s framework for participative medical science and policy
Summary: This briefing addresses the nature of participative science in both community/social and clinical medicine, its rationale and value, and how it relates to the value, the framework, and the methods of the Tuke Institute. Its purpose is to help the reader understand the nature of participative science and the work of the Tuke Institute in its broadest sense1.The Tuke Institute addresses some of the most difficult problems in attempting to protect civil society’s well-being through the delivery of medical services. It bases its approach on a variation on and synthesis of a number of traditions of participative and translational science, including two particular traditions of participative science.
Response to the Department of Health’s National Health Service White Paper “Equity and Excellence: Liberating the NHS”
Summary: This response specifies problems in the White Paper around measuring the quality of services, the need for NICE standards about the design of medical services, the nature and efficacy of feedback, the need for common coding of data measuring health-outcomes (using the WHO’s International Classification of Functioning, Disability, and Health, not just the ICD-10), ways in which continuity of care can be improved and audited, the essential nature and limits to public participation in medical services, problems with the idea of GP consortia-based commissioning, and fundamental flaws in a pro-market approach to a pro-social system in terms of regulation.
Response to “Developing our NHS Care-Objectives: A Consultation on the Draft-Mandate to the NHS Commissioning Board”
Summary: This response specifies problems in the NHS draft-mandate on care-objectives. Though the draft-mandate is a positive first step towards a more patient-centred approach to healthcare, there are significant conceptual, strategic, and technical problems in the document. Methods to ensure transparency and accountability are necessary, along with establishing more concrete definitions of concepts such as patient-centredness, normative strategies for implementation and relevant methods of assessing progress are necessary to ensure that an integrated patient-centred service is implemented that focuses on specific comprehensive and personal health outcomes.