Ferris France, N., 2012. ‘An unspoken world of unspoken things: A study identifying and exploring core beliefs underlying self-stigma among people living with HIV and AIDS in Ireland’. Dublin: The University of Dublin.
This blog-post is a mirror of the page at www.tukeinstitute.org/ihse in order to facilitate comments.
Title: Index of Health-Services’ Effectiveness (IHSE) in HIV: Discussion-document
Date: 2013.01.10 (ISO 8601)
Author: Rupert Whitaker
This document is presented for the purposes of comment and feedback. Due to a failure of the WP commenting system at the moment, please provide comments via the Contact Us (www.tukeinstitute.org/contact-us) page. We would be grateful for feedback on questions such as:
- what could be better in this Index and how?
- what should be removed and why?
- is this a good/helpful/necessary idea?
- how should this be promoted?
- which organisations should promote the use of this Index, if any?
An index of the health-effectiveness of services is proposed as a measure of the degree to which such services are effective in helping people maintain or resume a normal, healthy, daily life. This is a universally relevant Index but we are looking to pilot it 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.
Most health-services for HIV focus currently on treatment of the virus, where treatment-success is measured in terms of the amount of virus detectable in the blood and whether the T-cell count is within a normal range; assessment of illness is limited and primarily focused on bodily signs. Research shows that this approach is insufficient to ensure that people with HIV are able to lead full, healthy lives; people with undetectable viral load and ‘normal’ levels of T cells can still be unnecessarily ill, due to the interaction of complex physical, mental, and social — or “biopsychosocial” — issues.
Although the physician-dominated British government’s Expert Advisory Group on AIDS called these issues “window-dressing”, the clinical and public health evidence available shows strongly that it is these issues that are significantly responsible for the continuing transmission of the virus as well as the diverse co-morbidities of HIV infection related to poor health-outcomes among those already infected.
Scientific research has also identified various factors that contribute to services’ effectiveness in creating good outcomes, defined in terms that are relevant to daily life and health. These factors include comprehensive/biopsychosocial services that are integrated, easily usable, of good quality, delivered by appropriately-trained professionals in a patient-centred manner, and — crucially — services that empower patients to take responsibility for their health and health-behaviours. Empowerment means that people with HIV are able to participate in, and have influence over, the emotional, occupational, social, political, and health-service contexts in which they move. Empowerment enables health and minimises disability; conversely, disempowerment — as with unresponsive, inadequate, or irrelevant services — promotes disablement and disability. The concept of empowerment in HIV-services stems from the Denver Principles and relates to work currently underway on the Denver Principles Empowerment Index, led by Sean Strub (cf. www.seroproject.com).
The effectiveness of services can be measured, but the mediating factors that enable and promote health can also be measured. Their measurement can contribute significantly to the betterment of services and, thus, the betterment of the health of people with HIV. The Tuke Institute proposes measures for six central criteria, each with sub-criteria, which would form an index of the health-effectiveness of services for people with HIV.
- effectiveness in terms of health-status, in which clinics must show:
- that they measure patients health-status on entry and at various stages of service, to measure the effectiveness of their services
- that the measures of health are comprehensive —i.e., embracing physical, mental, behavioural, and social health
- that the measures of health are patient-centred and meaningful to the patients in their own lives
- empowerment and participation of patients
- clinics must show that they empower patients to participate in various levels of service, from clinical decision-making to complaints-handling, audit and governance, and planning and policy-development
- that participation is systemic rather than using unelected ‘representatives’
- patients must be enabled to take responsibility for their health, addressing all aspects of their physical and mental health in social context
- comprehensiveness of services
- clinics must show that they provide services that address all aspects of illness, including physical, mental, behavioural, and social
- that they integrate services addressing clinical prevention, treatment, and rehabilitation
- integration of services
- clinics must show that they have integrated biopsychosocial services
- they must demonstrate integration through various methods (e.g., nurse-leadership, case-conferencing, case-management, co-localisation, etc)
- they must show how they integrate therapeutic interventions with both primary and secondary preventive interventions
- quality — clinics must show that their services are of good quality in terms of:
- the ready availability and variety of primarily evidential treatments and treatment-modalities (chemical, psychological, nutritional, surgical, etc)
- clinicians’ competence in reference to their role — clinicians working only within their areas of qualified expertise (e.g., physicians not providing psychotherapy/counselling unless they are also qualified as psychotherapists)
- the clinic’s physical quality (structures, aesthetics, cleanliness, etc)
- the clinic’s cultural health (staff morale, pro-patient attitudes, team-function, communication-skills of both clinical and non-clinical service-providers, positive responsiveness to complaints, etc)
- usability — clinics must show that they provide services of good quality in a way that is most efficient and easy to use for the patients, particularly in terms of:
- geographical accessibility
- temporal accessibility (opening-hours, weekend and evening opening, waiting-times, etc)
- flexible communication-methods with patients
Data on each of these measures would be collected by a variety of respondents, including the Tuke Institute directly, service-users, service-providers. The data would be reported to the public as buyers of the services and to the commissioners of the services as guardians of public funds, to ensure effective commissioning.
The performance of any given service would be reported based on weakest-link analysis, in which criteria are reported by the lowest score achieved in each sub-criterion, rather than the average of sub-criteria. The rationale behind this lies in the fact that, as services are systems, a break in the chain of delivery means that all elements in the system therefore are either reduced in effectiveness or fail. This Index brings with it a graded kitemark of quality from basic (bronze) to excellent (gold), with explanations as to areas in which a provider can better its services.
The proposed Index is valuable for a number of reasons. As well as being a tool for promoting effectiveness in health-services in HIV, it is a resource for service-providers: it identifies standards to which all services should aspire while educating both service-users and service-providers about the ingredients and importance of health-effective services. Using this Index, clinics will be able to show their commitment to the well-being of people with HIV by meeting the criteria for optimal services, and ensuring that they are fully up-to-date with the best practices in serving the health-needs of people with HIV through appropriate training. It is a means also for service-providers, as leaders in quality, to achieve public recognition for their commitment to the health of their service-users. It can also provide a blue-print on which measures of services for other chronic-terminal conditions can be based, thus demonstrating leadership by the HIV-sector once again.
By educating service-users, it also raises reasonable and informed expectations as to the quality of services, and provides leverage with which to promote health-effective services. It is also a resource for people with HIV to identify those services that are committed to providing health-effective services and which, therefore, are committed to the well-being of people with HIV.
We’ve just posted a discussion-document about one of our projects, the Index of Health-Services’ Effectiveness (www.tukeinstitute.org/ihse). This is proposed as a tool to help us as public and patients know which services help us to get well and to stay well — the essential purpose of health-services, after all. Current measures don’t do this, focused as they are on quality issues that, in themselves, are all well and good but don’t relate to health-outcomes. So, our document supports the government’s current draft of the NHS Mandate and shows a way in which health-services can be monitored in terms of their effectiveness. It would use information from a number of sources, including patients, providers, independent organisations, and the Tuke Institute itself. The document also identifies ways in which the results might be reported and used. We hope that you will have a look at the page (www.tukeinstitute.org/ihse) and give us your feedback. We think it’s a crucial element missing in the toolkit of service-evaluation and it would ensure the most effective services are delivered for the patients’ benefit first and foremost. And that’s what the Tuke Institute is all about.
By Karen Foster MSc
When I was first asked to write a blog about my experience of accessing health services I thought at first, that I’d simply be writing a description of my interactions. However, after thinking about this in greater detail it dawned on me that the negative aspects of what I and the many people I have subsequently spoken to have encountered, is only a very small part of what seems to be a much larger concern. There appears to be a disease epidemic sweeping through many of the NHS GP surgeries, and this disease I believe should be labelled narcissism. I’ve recently read a very interesting book by John Banja titled ‘Medical Errors and Medical Narcissism’. Here Banja states that the characteristics of the medical narcissist include emotional disengagement, ideological rigidity and compulsiveness. He goes on to say that although these traits would originally start in childhood, they are later reinforced during medical training. This may explain why it seems so prevalent and why it has earned my label of ‘epidemic’.
Interestingly, although this disease seems to affect large numbers of physicians, it does not appear that they stand together as a group. In the 1970’s, a psychologist called Henri Tajfel introduced the idea of social identity theory which has helped to inform a lot of research around discrimination exploring how and why groups form. What appears to be happening with our physicians is incongruent with Henri Tajfel’s ingroup/outgroup theory where the two groups are totally dichotomised and the ingroup members support each other unquestionably, as is the prerequisite of this membership. This is a much more complex issue. Although the physicians are all members of the same group, they take an independent stance within this group and quite often against each other. In my own experience as a medical and health professional, I have witnessed the cohesive, public defence of a colleague who has been accused of negligence but, in private, I’ve witnessed his annihilation. Publicly they close ranks, and this has been witnessed in many of the recent governmental inquiries such as the Bristol Inquiry.
I believe that most people have probably experienced this form of narcissism in some shape or form and it can be evidenced in a number of ways. Has anybody ever had the misfortune of a physician choosing not to acknowledge a condition that had previously been diagnosed by someone other than themselves or originating from their clinic? I certainly have. This has ranged from very minor complaints to rather serious genetic conditions and has left me rather baffled as to why this would be denied. Having spoken to other medical professionals, it has been suggested that this may be attributed to avoidance of cost for their surgery, but surely it has to be more expensive to start the diagnostic process from the beginning rather than continuing pre-existing treatment. I really do believe that this is nothing short of their own arrogance, with the presumption that only they should make that diagnosis. The Oxford Medical Dictionary defines narcissism as “an excessive involvement with oneself and one’s self-importance”. I think this is a very apt description of what appears to be happening here.
I’ve worked in the field of health and medicine all my adult life and am educated to postgraduate level in a non-clinical field. Although I am not a physician, my medical and biological knowledge is quite good. In addition, fuelled by my position as a scientist and coupled with being someone who values quality and attention to detail, I spend a lot of time on additional research for any medical concern I may have. Therefore I find it infuriating when met with comments such as “and what is it you believe you understand about this condition”? or “I’ll be the judge of that” when discussing my concerns. This attitude has often resulted in a very protracted (and an unnecessarily costly) route to a diagnosis for which I had originally suggested. Being knowledgeable about biology coupled with the knowledge of one’s own body’s functioning should be advantageous to a consultation, when this is accepted as collaborative. Unfortunately, this does not seem to be the case when dealing with a narcissistic personality, and is regularly met with patronising and condescending comments. A narcissist will resist input from anyone else, and these type of responses are all symptoms of the narcissistic personality. Banja suggests that those afflicted with medical narcissism have an intense anxiety about their own welfare, therefore would not take kindly to a patient either questioning or suggesting. However, there have been occasions where I have not divulged my professional background nor presented any further information beyond an explanation of symptoms, taking a submissive and an almost obtuse position. This has elicited a very different response, one which is pleasant and polite but authoritarian. However, before I develop an inferiority complex regarding my lack of clinical qualifications and thus the derogated status in which physicians perceive me to be, this attitude has also been regularly experienced by friends and colleagues who are clinically qualified. So it seems that this is the default position shown to all ‘patients’ who do not ‘play dumb’.
However, it is necessary to consider how much of the blame for this disease afflicting our physicians we should we take responsibility for ourselves, as patients. Have we as a society sat subservient for too long, therefore creating and thus enabling this behaviour? We have for many, many years been conditioned to believe that physicians’ authority is not be questioned but maybe it is now time to make some adjustments to this relationship. We need to rebalance the power, thus helping our health and wellbeing in the process by allowing the patient to play a respected and proactive role. An informed patient can be an asset to any consultation process, with studies showing that a when a patient feels they are involved in a collaborative process there is greater adherence to treatment regimens. The narcissistic physician supports physician- centred medicine, however for effective health outcomes it is necessary to change this to patient-centred medicine where the patient is given a voice and the ability to take responsibility for their own well being.
By Karen Foster
I have been given an exciting task— to explore the role of the House-Philosopher. The title is rather impressive. One that is quite fun to fling around at a cocktail party. ‘As a House-Philosopher, I…’ But I have quickly realised that as I start unpacking this title I only have a vague ambiguous greyish understanding of what it all means. What is it to be a House-Philosopher? What do we do? How do we actually contribute to anything beyond shouting theoretical categories from the spires of glistening ivory towers? And why is there a need for philosophy in increasingly difficult economic times?
When I think of a House-Philosopher, it immediately conjures up descriptions of Descartes in the royal courts, philosophising with princess Christina of Sweden. Or Socrates tirelessly trodding the dusty streets of Athens with his cluster of followers. They prodded the minds of those who listened. Challenged them to dig deeper, to ask better questions. And I wonder— where does that put the post-modern House-Philosopher— where does that put me?
Searching the Internet, I find a scattering of people with this ambiguous title. One is Google’s own prominent House-Philosopher, Damon Horowitz. I click on a YouTube link and find myself drawn into a conversation of ethics and technology and just how one ought to respond with the tools and influences that are within one’s grasp. And I am struck by just how relevant it all seems. This guy has been able to climb down the ivory tower and deliver an edible bread to the people.
So as I reflect on this new role, I ask myself, how can I bring any bread or nourishment to the work of the Tuke Institute? How can I ask questions that will probe deeply into the essence and the underlying foundations of the Tuke Institute? How can I ask the right kind of questions? I hope that this guest-blog will be a means of exploring just this. And I hope that it can generate feedback and discussion, propelling the monologue into a full-fledged conversation between questioning minds. Perhaps something Socrates would have been quite excited about.
An overview of collected works published by the Tuke Institute and other organisations on the topic of patient-centred health-services.
08 Oct 2012 11:25
By Anna Westin
I live in the age of the consumer. To a certain extent, this is a self-fulfilling prophecy: I watch the adverts, take heed of the Vogue fashion updates and ask the expert salesman for advice before a purchase. I love the thrill of spending– the ability to get something new so easily with the touch of a plastic card. Consuming has become a central part of who I am, without really any conscious consent.
But sometimes I wonder about this. Because as I start to tally up my balance for the end of the month, and find storage for the last purchased item that somehow I had to have, I wonder if I don’t begin to feel overwhelmed by it all. ‘Keeping up with the Jones’ as a way of saying, Here I am– I am a person that is to be taken seriously in the sea of iPhones and Barbours and boots. Essentially, I am to be taken seriously as a person because I consume seriously. I am defined by my Brand. And this is what starts to get my philosophy mind in a knot, because it hammers close to the sacred ground of the categorical imperative. Treat people as an end and never as a means to an end. I think Kantian and start to feel uneasy with how I define myself and my own self-worth. Surely it is I, the person, that am to be taken seriously because I am me, rather than because I consume the ‘right’ things at the right time and stretch my pocketbook obligingly for the demanded purchase.
I am more than what I consume. Looking at this I think- of course I am! But I think that it is a truth that I often lose sight of in the flurry of insecurity and busyness and psychologically customised adverts that flare up like utopian retreats and cashmere sweaters that make the family problems and difficult realities fade away. In essence, consumption can become my own passive retreat away from the active synthesis of the everyday life and bustle and activity.
And this is what I worry about. Because I wonder what happens to us when our way of living becomes a sort of ‘passive retreating’– a kind of relinquishing responsibility of the profound challenges that we face onto the plastic surface of our visa card. I am concerned how this translates to the philosopher’s dilemma of ontology and understanding our own concept of being. And I wonder what it means for our health.
If I am ill, then I want to find the best way of making myself well again. With the incredible advancements in medical technology and pharmaceuticals, we have been given a multitude of options that make the process of ‘getting well’ easier. But the challenge is that I cannot become well when I just consume. Because somehow, I am something more than the ‘stuff’, and without somehow entering into and claiming the process of ‘getting well’ for myself, it remains outside of me. A model of health services that allow those suffering with illness to sit back and relax as the expert feeds them with new pills and techniques is not one that can create health. The WHO states that health is “a state of complete physical, mental and social well-being, and not merely the absence of disease” (1948, UDHR). This cannot be achieved without considerable time and effort– I need to be the one who instigates this process. I need to be the one who takes active responsibility for my own health.
This is, of course, so much more easily said than done. If I am sick, and I am involved in all the busyness of this London life, then oftentimes it is very difficult to actively respond to the physical, social and mental challenges that we are confronted with. However, I don’t know if we really have an option. In a society that is propelling itself towards heightened consumption, the passive consumption of health services is a tantalising option. The problem is that it won’t work– we won’t return to a state of health and stay there, because we haven’t done anything to get us back to that state ourselves. The challenge of consumerism is one of identity and holding up the human over the Brand. But more practically in health-services, the challenge is to assert an active responsibility for my own health and start caring and participating in the process of ‘getting well’ again.
10 Jul 2012 04:32
A good Guardian Comment article here on why home-based HIV testing is a bad idea. Health-services should increase quality, not outsource their failures to the sector or rely on technology and ignore the social problems that accompany it. Bisi Alimi writes eloquently of the problems surrounding the real-life use of home-based HIV testing. Orasure have been trying for years to access this market, without due regard to the mental and social damage that this technology can cause. It is not like testing for pregnancy, but more like testing for a genetic disease for which the treatment is not curative. A great disappointment to those who are concerned for the health of people with HIV.
|WASHINGTON, DC – FEBRUARY 7: AmeriCorps volunteers Michael Fox (L) and Isabel Hirsch (C) talk while a client waits for the results of an HIV test during a free HIV testing event at by the Whitman-Walker Health February 7, 2012 in Washington, DC. Whitman-Walker Health held the event to observe National Black HIV/AIDS Awareness Day. (Image credit: Getty Images via @daylife)|