You are not alone...making an informed decision about your pregnancy, January 1997

When you are faced with a difficult decision, it’s not unusual to feel confused, frustrated, and perhaps a little frightened because you are not sure what to expect or where to turn for answers. The purpose of this handbook is to assist you in making an informed choice about your pregnancy.

Tools for better SLM knowledge management and informed decision-making in addressing land degradation at different scales: the WOCAT–LADA–DESIRE methodology

Desertification research conventionally focuses on the problem – that is, degradation – while neglecting the appraisal of successful conservation practices. Based on the premise that Sustainable Land Management (SLM) experiences are not sufficiently or comprehensively documented, evaluated, and shared, the World Overview of Conservation Approaches and Technologies (WOCAT) initiative (www.wocat.net), in collaboration with FAO’s Land Degradation Assessment in Drylands (LADA) project (www.fao.org/nr/lada/) and the EU’s DESIRE project (http://www.desire-project.eu/), has developed standardised tools and methods for compiling and evaluating the biophysical and socio-economic knowledge available about SLM. The tools allow SLM specialists to share their knowledge and assess the impact of SLM at the local, national, and global levels. As a whole, the WOCAT–LADA–DESIRE methodology comprises tools for documenting, self-evaluating, and assessing the impact of SLM practices, as well as for knowledge sharing and decision support in the field, at the planning level, and in scaling up identified good practices. SLM depends on flexibility and responsiveness to changing complex ecological and socioeconomic causes of land degradation. The WOCAT tools are designed to reflect and capture this capacity of SLM. In order to take account of new challenges and meet emerging needs of WOCAT users, the tools are constantly further developed and adapted. Recent enhancements include tools for improved data analysis (impact and cost/benefit), cross-scale mapping, climate change adaptation and disaster risk management, and easier reporting on SLM best practices to UNCCD and other national and international partners. Moreover, WOCAT has begun to give land users a voice by backing conventional documentation with video clips straight from the field. To promote the scaling up of SLM, WOCAT works with key institutions and partners at the local and national level, for example advisory services and implementation projects. Keywords: Sustainable Land Management (SLM), knowledge management, decision-making, WOCAT–LADA–DESIRE methodology.

Minimizing nasty surprises with better informed decision-making in self-adaptive systems

Designers of self-adaptive systems often formulate adaptive design decisions, making unrealistic or myopic assumptions about the system's requirements and environment. The decisions taken during this formulation are crucial for satisfying requirements. In environments which are characterized by uncertainty and dynamism, deviation from these assumptions is the norm and may trigger 'surprises'. Our method allows designers to make explicit links between the possible emergence of surprises, risks and design trade-offs. The method can be used to explore the design decisions for self-adaptive systems and choose among decisions that better fulfil (or rather partially fulfil) non-functional requirements and address their trade-offs. The analysis can also provide designers with valuable input for refining the adaptation decisions to balance, for example, resilience (i.e. Satisfiability of non-functional requirements and their trade-offs) and stability (i.e. Minimizing the frequency of adaptation). The objective is to provide designers of self adaptive systems with a basis for multi-dimensional what-if analysis to revise and improve the understanding of the environment and its effect on non-functional requirements and thereafter decision-making. We have applied the method to a wireless sensor network for flood prediction. The application shows that the method gives rise to questions that were not explicitly asked before at design-time and assists designers in the process of risk-aware, what-if and trade-off analysis.

The relationship between health literacy and indicators of informed decision making for colorectal cancer screening among African Americans

African Americans are disproportionately affected by colorectal cancer (CRC) incidence and mortality. CRC early detection leads to better treatment outcomes and, depending on the screening test, can prevent the development of CRC. African Americans, however, are screened less often than Whites. Aspects of decision making (e.g., decisional conflict, decision self-efficacy) can impact decision making outcomes and may be influenced by social determinants of health, including health literacy. However the relationship between social determinants of health and indicators of decision making in this population is not fully understood. Additionally, individuals have a choice between different CRC screening tests and an individual’s desire to use a particular screening test may be associated with social determinants of health such as health literacy. This study aimed to examine the relationship between social determinants of health and indicators of decision making for CRC screening among African Americans. A total of 111 participants completed a baseline and 14-month follow-up survey assessing decisional conflict, decision self-efficacy, decisional preference (shared versus informed decision making), and CRC test preference. Health literacy was negatively associated with decisional conflict and positively associated with decision self-efficacy (ps < .05). Individuals who were unemployed or working part-time had significantly greater decisional conflict than individuals working full-time (ps < .05). Individuals with a first-degree family history of CRC had significantly lower decision self-efficacy than individuals without a family history (p < .05). Women were significantly more likely to prefer making a shared decision rather than an informed decision compared to men (p < .05). Lastly, previous CRC screening behavior was significantly associated with CRC test preference (e.g., individuals previously screened using colonoscopy were significantly more likely to prefer colonoscopy for their next screening test; ps < .05). These findings begin to identify social determinants of health (e.g., health literacy, employment) that are related to indicators of decision making for CRC among African Americans. Furthermore, these findings suggest further research is needed to better understand these relationships to help with the future development and improvement of interventions targeting decision making outcomes for CRC screening in this population.

Health professionals ethical and legal liability on patient’s inadequate clarification in order to obtain free and informed consent

It is required that patients are provided information about therapeutic possibilities, showing the risks, benefits, prognosis and costs of each possible and indicated alternative. This is an ethical and legal resolution. However, health professionals possess the clinical/technical/scientific knowledge and determine what information will be (or not) provided. The patient in question decides to undergo a treatment, providing his/her free and informed consent on the basis of the data presented. Unfortunately, some professionals may not provide all the information necessary for making an informed decision or, after obtaining the consent of the patient, may provide him information that causes the patient to give up on the treatment initially accepted. Such information, if relevant, and not a supervening fact, should have been provided initially. However, the information may not be entirely true, and bring the patient, for instance, to decide based on inadequately presented risks. The craniofacial rehabilitation of the temporomandibular joint (TMJ) by means of TMJ prosthesis, is indicated in many situations. Often, patients in need of such prostheses have aesthetic and functional problems and the rehabilitation expectations run high. This work presents a case and discusses ethical and legal issues, including the liability of partial and inadequate information to a patient.

A review of economic analysis in the vaccination program; decision making and governance: Adivisory Committee on Immunization Practices (ACIP)

The Advisory Committee on Immunization Practices (ACIP) develops written recommendations for the routine administration of vaccines to children and adults in the U.S. civilian population. The ACIP is the only entity in the federal government that makes such recommendations. ACIP elaborates on selection of its members and rules out concerns regarding its integrity, but fails to provide information about the importance of economic analysis in vaccine selection. ACIP recommendations can have large health and economic consequences. Emphasis on economic evaluation in health is a likely response to severe pressures of the federal and state health budget. This study describes the economic aspects considered by the ACIP while sanctioning a vaccine, and reviews the economic evaluations (our economic data) provided for vaccine deliberations. A five year study period from 2004 to 2009 is adopted. Publicly available data from ACIP web database is used. Drummond et al. (2005) checklist serves as a guide to assess the quality of economic evaluations presented. Drummond et al.'s checklist is a comprehensive hence it is unrealistic to expect every ACIP deliberation to meet all of their criteria. For practical purposes we have selected seven criteria that we judge to be significant criteria provided by Drummond et al. Twenty-four data points were obtained in a five year period. Our results show that out of the total twenty-four data point‘s (economic evaluations) only five data points received a score of six; that is six items on the list of seven were met. None of the data points received a perfect score of seven. Seven of the twenty-four data points received a score of five. A minimum of a two score was received by only one of the economic analyses. The type of economic evaluation along with the model criteria and ICER/QALY criteria met at 0.875 (87.5%). These three criteria were met at the highest rate among the seven criteria studied. Our study findings demonstrate that the perspective criteria met at 0.583 (58.3%) followed by source and sensitivity analysis criteria both tied at 0.541 (54.1%). The discount factor was met at 0.250 (25.0%).^ Economic analysis is not a novel concept to the ACIP. It has been practiced and presented at these meetings on a regular basis for more than five years. ACIP‘s stated goal is to utilize good quality epidemiologic, clinical and economic analyses to help policy makers choose among alternatives presented and thus achieve a better informed decision. As seen in our study the economic analyses over the years are inconsistent. The large variability coupled with lack of a standardized format may compromise the utility of the economic information for decision-making. While making recommendations, the ACIP takes into account all available information about a vaccine. Thus it is vital that standardized high quality economic information is provided at the ACIP meetings. Our study may provide a call for the ACIP to further investigate deficiencies within the system and thereby to improve economic evaluation data presented. ^

Epidemiological modelling (including economic modelling) and its role in preventive drug therapy

In contrast to curative therapies, preventive therapies are administered to largely healthy individuals over long periods. The risk-benefit and cost-benefit ratios are more likely to be unfavourable, making treatment decisions difficult. Drug trials provide insufficient information for treatment decisions, as they are conducted on highly selected populations over short durations, estimate only relative benefits of treatment and offer little information on risks and costs. Epidemiological modelling is a method of combining evidence from observational epidemiology and clinical trials to assist in clinical and health policy decision-making. It can estimate absolute benefits, risks and costs of long-term preventive strategies, and thus allow their precise targeting to individuals for whom they are safest and most cost-effective. Epidemiological modelling also allows explicit information about risks and benefits of therapy to be presented to patients, facilitating informed decision-making.

Improvements to peroxide oxidation methods for analysing sulfur in acid sulfate soils

Improvements to peroxide oxidation methods for analysing acid sulfate soils (ASS) are introduced. The soil solution ratio has been increased to 1 : 40, titrations are performed in suspension, and the duration of the peroxide digest stage is substantially shortened. For 9 acid sulfate soils, the peroxide oxidisable sulfur value obtained using the improved method was compared with the reduced inorganic sulfur result obtained using the chromium reducible sulfur method. Their regression was highly significant, the slope of the regression line was not significantly different (P = 0.05) from unity, and the intercept not significantly different from zero. A complete sulfur budget for the improved method showed there was no loss of sulfur as has been reported for earlier peroxide oxidation techniques. When soils were very finely ground, efficient oxidation of sulfides was achieved, despite the milder digestion conditions. Highly sulfidic and organic soils were shown to be the most difficult to analyse using either the improved method or the chromium method. No single analytical method can be universally applied to all ASS, rather a suite of methods is necessary for a thorough understanding of many ASS. The improved peroxide method, in combination with the chromium method and the 4 M HCl extraction, form a sound platform for informed decision making on the management of acid sulfate soils.

Does research into sensitive areas do harm? Experiences of research participation after a child's diagnosis with Ewing's sarcoma

Objective: To investigate family members' experiences of involvement in a previous study (conducted August 1995 to June 1997) following their child's diagnosis with Ewing's sarcoma. Design: Retrospective survey, conducted between 1 November and 30 November 1997, using a postal questionnaire. Participants: Eighty-one of 97 families who had previously completed an in-depth interview as part of a national case-control study of Ewing's sarcoma. Main outcome measures: Participants' views on how participation in the previous study had affected them and what motivated them to participate. Results: Most study participants indicated that taking part in the previous study had been a positive experience. Most (n = 79 [97.5%]) believed their involvement would benefit others and were glad to have participated, despite expecting and finding some parts of the interview to be painful. Parents whose child was still alive at the time of the interview recalled participation as more painful than those whose child had died before the interview. Parents who had completed the interview less than a year before our study recalled it as being more painful than those who had completed it more than a year before. Conclusions: That people suffering bereavement are generally eager to participate in research and may indeed find it a positive experience is useful information for members of ethics review boards and other gatekeepers, who frequently need to determine whether studies into sensitive areas should be approved. Such information may also help members of the community to make an informed decision regarding participation in such research.

Sistemas de prevenção de cuidados de saúde

A tomada de decisão na saúde pode-se tornar um processo complexo e moroso. A complexidade associada ao processo de decisão na saúde advém da diversidade de opções clinicamente razoáveis, ou seja, nenhuma opção se sobrepõem _a outra, visto que cada uma possui os seus riscos e benefícios, que são normalmente interpretados de modo diferente entre os indivíduos. Desta forma, cabe ao paciente e _a sua equipa médica optarem pela opção que melhor se enquadra na situação clínica do paciente Para tornar este processo menos complexo, cada vez mais se utiliza as chamadas "ferramentas de decisão", que se caraterizam por fornecer informação sobre as diferentes opções clínicas, traduzindo-se numa diminuição da dificuldade da tomada de decisão. De uma forma geral, as ferramentas de decisão são desenvolvidas com o intuito de facilitar a tomada de decisão, através do aumento do conhecimento científico sobre um determinado problema (tomada de decisão informada) e uma mudança de atitude do paciente face aos seus cuidados de saúde. Na realização da presente dissertação foi desenvolvido um sistema de informação na web, que engloba informação relativa ao rastreio do cancro da próstata. Este sistema também surge acoplado a um conjunto de componentes de decisão, que têm como objetivo auxiliar os indivíduos no processo de decisão para a realização do rastreio do cancro da próstata, assim como a prevenção de doenças relacionadas com a próstata. A implementação desta aplicação web teve como base as necessidades do indivíduo, ou seja informações clínicas sobre possíveis riscos e benefícios associados ao rastreio, assim como fornecer uma maior interatividade com o utilizador. A primeira versão da aplicação já foi testada e avaliada através da participação de um conjunto de indivíduos que compõem o público-alvo para este tipo de aplicações. Os resultados obtidos permitiram concluir que os requisitos definidos para esta aplicação, permitem o aumento do conhecimento do indivíduo e o auxílio na tomada de decisão para a realização do rastreio do cancro da próstata.

Quality in Hospital Administrative Databases

The clinical content of administrative databases includes, among others, patient demographic characteristics, and codes for diagnoses and procedures. The data in these databases is standardized, clearly defined, readily available, less expensive than collected by other means, and normally covers hospitalizations in entire geographic areas. Although with some limitations, this data is often used to evaluate the quality of healthcare. Under these circumstances, the quality of the data, for instance, errors, or it completeness, is of central importance and should never be ignored. Both the minimization of data quality problems and a deep knowledge about this data (e.g., how to select a patient group) are important for users in order to trust and to correctly interpret results. In this paper we present, discuss and give some recommendations for some problems found in these administrative databases. We also present a simple tool that can be used to screen the quality of data through the use of domain specific data quality indicators. These indicators can significantly contribute to better data, to give steps towards a continuous increase of data quality and, certainly, to better informed decision-making.

Autoimmune diseases and pregnancy: analysis of a series of cases

BACKGROUND: An autoimmune disease is characterized by tissue damage, caused by self-reactivity of different effector mechanisms of the immune system, namely antibodies and T cells. All autoimmune diseases, to some extent, have implications for fertility and obstetrics. Currently, due to available treatments and specialised care for pregnant women with autoimmune disease, the prognosis for both mother and child has improved significantly. However these pregnancies are always high risk. The purpose of this study is to analyse the fertility/pregnancy process of women with systemic and organ-specific autoimmune diseases and assess pathological and treatment implications. METHODS: The authors performed an analysis of the clinical records and relevant obstetric history of five patients representing five distinct autoimmune pathological scenarios, selected from Autoimmune Disease Consultation at the Hospital of Braga, and reviewed the literature. RESULTS: The five clinical cases are the following: Case 1-28 years old with systemic lupus erythematosus, and clinical remission of the disease, under medication with hydroxychloroquine, prednisolone and acetylsalicylic acid, with incomplete miscarriage at 7 weeks of gestation without signs of thrombosis. Case 2-44 years old with history of two late miscarriages, a single preterm delivery (33 weeks) and multiple thrombotic events over the years, was diagnosed with antiphospholipid syndrome after acute myocardial infarction. Case 3-31 years old with polymyositis, treated with azathioprine for 3 years with complete remission of the disease, took the informed decision to get pregnant after medical consultation and full weaning from azathioprine, and gave birth to a healthy term new-born. Case 4-38 years old pregnant woman developed Behcet's syndrome during the final 15 weeks of gestation and with disease exacerbation after delivery. Case 5-36 years old with autoimmune thyroiditis diagnosed during her first pregnancy, with difficult control over the thyroid function over the years and first trimester miscarriage, suffered a second miscarriage despite clinical stability and antibody regression. CONCLUSIONS: As described in literature, the authors found a strong association between autoimmune disease and obstetric complications, especially with systemic lupus erythematosus, antiphospholipid syndrome and autoimmune thyroiditis.

All-Ireland Health Data Inventory. Part 1: Metadata for key data sources, version 1.0

The All-Ireland Health Data Inventory. Part 1 is a catalogue of key sources of health data in the Republic and Northern Ireland. It includes relevant datasets from the major information reviews, conducted in the North and South, in the past few years. Information is essential for informed decision making and service provision. This inventory draws together information sources to facilitate such decision making. The inventory is intended as a resource for health professionals, researchers and the general public, providing the first phase of a ‘one-stop’ catalogue of health data. The datasets have been catalogued using an expanding numbering system which will allow for the inclusion of future resources. The Institute of Public Health in Ireland is in the process of expanding the Inventory to include further data sources.

Equality Impact Assessment Guidance Framework (PDF 177 KB)

This document sets out a guidance framework for undertaking an EQIA, and has been approved by the Equality Steering Group and the Regional Equality Liaison Panel. The framework is designed to assist practitioners or managers having to undertake an EQIA for the first time. The framework will: - Introduce policy makers to an effective EQIA approach, setting out a recognised need for specific requirements and guidance on how to fulfil equality requirements; - Steer policy makers to where to seek help, including key documents and additional information sources. åÊ

Eye screening for diabetics - prevents blindness

Diabetes is a common condition affecting around 69,000 people in Northern Ireland. One of the possible complications of diabetes is a condition called diabetic retinopathy, which can cause sight loss and blindness. Retinopathy causes damage to the tiny blood vessels (capillaries) that nourish the retina, the tissues in the back of the eye that deal with light. This can seriously affect vision.Research shows that if retinopathy is identified early, for example through retinal screening, and treated appropriately, blindness can be prevented in the majority of people with diabetes, both type 1 and type 2.Screening programmeIn Northern Ireland, a diabetic retinopathy screening programme (DRSP), run by the Public Health Agency, has been put in place to screen all eligible people with diabetes aged 12 years and over. Dr Bernadette Cullen, Consultant in Public Health Medicine, PHA, said: "Screening detects problems early and allows appropriate treatment to be offered. It is vital that everyone with diabetes attends diabetic retinopathy screening when it is offered. Early detection of potential problems offers a very real opportunity to intervene and, with appropriate treatment, can prevent blindness in the majority of those at risk."The screening testThe screening test involves photographs being taken of the back of each eye, using a special camera. The test is painless and takes about 15 minutes. If the person is over 50 years of age, they will need to have drops put in their eyes about 15 minutes before the test to dilate their pupils.The photographs are sent to the regional screening centre for analysis by trained graders. Results will show whether patients require further referral for assessment or treatment by hospital eye services (HES). If this is not required, screening will be offered again the following year.GPs are informed of all results and if the patient is under the care of a diabetologist, they too will be informed. Patients are informed of results by their GP and if they need an urgent referral, protocols are in place to ensure this happens.Many people with diabetes attend their optometrist (optician) on a regular basis to have a sight test for glasses. It is important they continue to do this - this test is free to people with diabetes. It is also vital that people with diabetes attend for diabetic retinopathy screening when invited, regardless of how or where their diabetes is treated, or whether they visit a hospital consultant/GP for their diabetic care.Patients are invited to screening via their GP practice. An information leaflet to help patients make an informed decision to attend for screening is also sent. This can be accessed via the PHA website: www.publichealth.hscni.net.