Supporting and resourcing treatment decision‐making: some policy considerations

This paper considers some of the policy implications of issues raised during a conference about treatment decision‐making in the clinical encounter held in Hamilton, Ontario in May 1999. Policies promoting patient participation in treatment decision‐making need to be flexible enough to ensure that they are appropriate across the range of contexts in which health care decisions are made and acceptable to people with diverse preferences and abilities. They should also be formulated in consideration of other health policies and of available resources. Policies of informing people and involving them in decisions about their care are unlikely to be simple to implement. Various strategies might be needed to support them. These include the development of appropriate skills among health professionals and in the general population, the use of interventions to encourage people to play more active roles in decisions about their health care, the provision of decision aids for people facing specific decisions and the provision and accreditation of more general information resources and services. If information and other facilitators of patient participation in decision‐making are seen as integral to good quality health care, then funding should be made available for them. This will, however, have opportunity costs. Policy makers’ decisions about how much health care funding should be invested in which strategies should be underpinned by good research evidence about the effects that different types of intervention have on a range of outcomes for individuals, health care systems and populations. The knowledge on which current policies are based is limited. The development of future policies will be enhanced if policy makers invest in critical conceptual thinking, reflective practice, imaginative development work and good quality evaluative research.     

Women's views of two interventions designed to assist in the prophylactic oophorectomy decision: a qualitative pilot evaluation

Introduction A qualitative pilot evaluation of two different decision interventions for the prophylactic oophorectomy (PO) decision: a Decision Chart and a computerized clinical guidance programme (CGP) was undertaken. The Decision Chart, representing current practice in decision interventions, presents population‐based information. The CGP elicits individual values to allow for quality‐adjusted life years to be calculated and an explicit guidance statement is given. Prophylactic oophorectomy involves removal of the ovaries as an adjunct to hysterectomy to prevent ovarian cancer. The decision is complex because the operation can affect a number of long‐term outcomes including breast cancer, coronary heart disease and osteoporosis. Methods Both interventions were based on the evidence and were administered by a facilitator. The Decision Chart is a file, which progressively reveals information in the form of bar charts. The CGP is a decision‐analysis based program integrating the results from a cluster of Markov cycle trees. The research evidence is incorporated with woman's individual risk factors, values and preferences. A purposive sample of 19 women awaiting hysterectomy used the decision interventions (10 CGP, nine Decision Chart). In‐depth semi‐structured interviews were undertaken. Interviews were transcribed and analysed to derive themes. Results Reactions to the different decision interventions were mixed. Both were seen as clarifying the decision. Some women found some of the tasks difficult (e.g. rating health status). Some were surprised by the ‘individualized’ guidance, which the CGP offered. The Decision Chart provided some with a sense of empowerment, although some found that it provided too much information. Conclusions Women were able to use both decision interventions. Both provided decision clarification. Problems were evident with both interventions, which give useful pointers for future development. These included the possibility for women to see how their individual risks of different outcomes are affected in the Decision Chart and enhanced explanation of the CGP tasks. Future design and evaluation of decision aids, will need to accommodate differences between patients in the desire for amount and type of information and level of involvement in the decision‐making process.     

Preliminary validation of the Satisfaction With Decision scale with depressed primary care patients

Objective To conduct a preliminary validation of the Satisfaction With Decision (SWD) scale with depressed primary care patients. Design Cross‐sectional observational pilot study using a postal survey. Setting and participants Depressed primary care patients (n = 97) who recently had made a new decision about antidepressant medication use completed surveys regarding their treatment decisions. Main variables Measures included patient‐reported satisfaction with decision, decisional conflict, knowledge about depression and treatment, decision involvement, pain and health status, antidepressant medication efficacy, and satisfaction with health services. Results The SWD scale had good internal consistency reliability (α = 0.85). Evidence for construct validity was confirmed via a hypothesized pattern of relationships between the SWD scale and other measures. Decision satisfaction was associated with several issues of relevance for designing patient‐centred decision support interventions: (1) knowledge about depression and treatment; (2) involvement in health‐related decisions; and (3) aiding evaluation of trade‐offs among pros and cons of treatment. Conclusions The results of this pilot study show that the SWD scale appears to be a psychometrically sound and practical measure for research with this population. Additional research is needed on the theoretical nature of decision satisfaction and developing and testing patient‐centred decision support interventions for depression treatment.     

What are the priorities for developing culturally appropriate palliative and end‐of‐life care for older people? The views of healthcare staff working in New Zealand

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, Pacific Island and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end‐of‐life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, Pacific Island and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide ‘hands‐on’ care. The role of family in decision‐making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in ‘hands‐on’ palliative care and decision‐making requires care staff to relinquish their role as ‘expert provider’. Counter to the prioritisation of autonomy in Western health‐care, collective decision‐making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end‐of‐life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision.     

Public involvement in health care priority setting: an economic perspective

Background  Public involvement in health care decision making and priority setting in the UK is being promoted by recent policy initiatives. In 1993, the British Medical Association called for public consultation where rationing of services was to be undertaken. The approach to priority setting advocated by many health economists is the maximization of quality adjusted life years (QALYs). Typically, for a particular health care programme, the QALY calculation takes account of four features: (1) the number of patients receiving the programme, (2) the survival gain, (3) the gain in quality of life and, (4) the probability of treatment success. Only one feature, that relating to quality of life, is based upon public preferences. If the QALY is to be used as a tool for health care resource allocation at a societal level then it should incorporate broader societal preferences.
Methods  This study used an interview-based survey of 91 members of the general public to explore whether the traditional QALY maximization model is a good predictor of public responses to health care priority setting choices.
Results and conclusions  Many respondents did not choose consistently in line with a QALY maximization objective and were most influenced by quality of life concerns. There was little support for health care programmes that provided a prognostic improvement but left patients in relatively poor states of health. The level of respondent engagement in the survey exercise was not sensitive to the provision of supporting clinical information.     

Dissemination of effectiveness and outcomes research

Effectiveness and outcomes research seeks to improve patients' health outcomes by improving the quality of the health care they receive. Dissemination of the findings of such research is a necessary step in that process. This paper reviews what is known about designing and disseminating effective information packages aimed at health care providers (mainly physicians), where effectiveness means promoting behavior change on the part of practitioners that leads to better patient care. Practice-relevant research information is delivered to providers through publication of results from randomized clinical trials, dissemination of consensus recommendations, development and use of computer-based aids to clinical decision making, and provision of continuing medical education. Each of these areas offers numerous examples of the exceedingly modest behavioral response that can be expected from the mere provision of information. The literature also offers some principles that may improve the chances for success, including the desirability of techniques that involve face-to-face interaction, promoting the active involvement of the learner, repeating the message, making recommendations explicit and relevant to clinical practice, and making use of opinion leaders and peer influence. Little basic research has been done on providers' motivations and actual decision-making processes. Research aimed at furthering a behavioral science of providers could yield new insights on effective dissemination strategies as well.     

Assessing patients’ involvement in decision making during the nutritional consultation with a dietitian

Background Shared decision making (SDM) represents an interesting approach to optimize the impact of dietary treatment, but there is no evidence that SDM is commonly integrated into diet‐related health care. Objective To assess the extent to which dietitians involve patients in decisions about dietary treatment. Methods We audiotaped dietitians conducting nutritional consultations with their patients, and we transcribed the tapes verbatim. Three trained raters independently evaluated the content of the nutritional consultations using a coding frame based on the 12 items of the French‐language version of the OPTION scale, a validated and reliable third‐observer instrument designed to assess patients’ involvement by examining specific health professionals’ behaviours. Coding was facilitated by the qualitative research software NVivo 8. We assessed internal consistency with Cronbach’s alpha and inter‐rater reliability with the intraclass correlation coefficient (ICC). Results Of the 40 dietitians eligible to participate in the study, 19 took part. We recruited one patient per participating dietitian. The overall mean OPTION score was 29 ± 8% [range, 0% (no patient involvement in the decision] to 100% [high patient involvement)]. The mean duration of consultations was 50 ± 26 min. The OPTION score was positively correlated with the duration of the consultation (r = 0.65, P < 0.01). Internal consistency and inter‐rater reliability were both good (Cronbach’s alpha = 0.72; ICC = 0.65). Conclusion This study is the first to use a framework based on the OPTION scale to report on dietitians’ involvement of patients in decisions about patients’ dietary treatment. The results suggest that involvement is suboptimal. Interventions to increase patients’ involvement in diet‐related decision making are indicated.     

Consumer input into health care: Time for a new active and comprehensive model of consumer involvement

Background

To ensure the provision of patient‐centred health care, it is essential that consumers are actively involved in the process of determining and implementing health‐care quality improvements. However, common strategies used to involve consumers in quality improvements, such as consumer membership on committees and collection of patient feedback via surveys, are ineffective and have a number of limitations, including: limited representativeness; tokenism; a lack of reliable and valid patient feedback data; infrequent assessment of patient feedback; delays in acquiring feedback; and how collected feedback is used to drive health‐care improvements.

Objectives

We propose a new active model of consumer engagement that aims to overcome these limitations. This model involves the following: (i) the development of a new measure of consumer perceptions; (ii) low cost and frequent electronic data collection of patient views of quality improvements; (iii) efficient feedback to the health‐care decision makers; and (iv) active involvement of consumers that fosters power to influence health system changes.     

Involving patients in decisions regarding preventive health interventions using the analytic hierarchy process

Practice guidelines that recommend active patient involvement in decisions about preventive health interventions are becoming increasingly common. These decisions frequently involve difficult trade‐offs between competing risks and benefits that require easily accessible information about the expected outcomes, superb doctor–patient communication, and effective integration of objective outcome data with individual values and preferences. Successful implementation of recommendations for shared decision‐making in preventive health care will require the development of efficient methods for making these complex decisions in busy practice settings. This article describes how the analytic hierarchy process, a multiple criteria decision‐making method, could facilitate successful implementation of shared decision‐making regarding preventive health care in clinical practice. The method is illustrated using recent guidelines for colorectal cancer screening for average risk patients issued by the American Gastroenterological Association.     

Comparative effectiveness research: Policy context,methods development and research infrastructure

Comparative effectiveness research (CER) has received substantial attention as a potential approach for improving health outcomes while lowering costs of care, and for improving the relevance and quality of clinical and health services research. The Institute of Medicine defines CER as ‘the conduct and synthesis of systematic research comparing different interventions and strategies to prevent, diagnose, treat, and monitor health conditions. The purpose of this research is to inform patients, providers, and decision‐makers, responding to their expressed needs, about which interventions are most effective for which patients under specific circumstances.’ Improving the methods and infrastructure for CER will require sustained attention to the following issues: (1) Meaningful involvement of patients, consumers, clinicians, payers, and policymakers in key phases of CER study design and implementation; (2) Development of methodological ‘best practices’ for the design of CER studies that reflect decision‐maker needs and balance internal validity with relevance, feasibility and timeliness; and (3) Improvements in research infrastructure to enhance the validity and efficiency with which CER studies are implemented. The approach to addressing each of these issues should be informed by the understanding that the primary purpose of CER is to help health care decision makers make informed clinical and health policy decisions. Copyright © 2010 John Wiley & Sons, Ltd.     

Mental health advocacy and African and Caribbean men: good practice principles and organizational models for delivery

Background Advocacy has a critical role to play in addressing concerns about access to appropriate mental health care and treatment for African and Caribbean men. Aim To investigate good practice principles and organizational models for mental health advocacy provision for African and Caribbean men. Study design The study consisted of: (i) A systematic literature review. Bibliographic and internet searching was undertaken from 1994 to 2006. The inclusion criteria related to mental health, advocacy provision for African and Caribbean men. (ii) Four focus groups with African and Caribbean men to explore needs for and experiences of mental health advocacy. (iii) An investigation into current advocacy provision through a survey of advocacy provision in England, Wales and Northern Ireland. (iv) Twenty‐two qualitative stakeholder interviews to investigate the operation of mental health advocacy for this client group. The study was undertaken in partnership with two service user‐led organizations and an African Caribbean mental health service. Results Primary research in this area is scant. Mainstream mental health advocacy services are often poor at providing appropriate services. Services developed by the Black Community and voluntary sector are grounded in different conceptualizations of advocacy and sharper understanding of the needs of African and Caribbean men. The lack of sustainable funding for these organizations is a major barrier to the development of high‐quality advocacy for this group, reflecting a lack of understanding about their distinctive role. Conclusions The commissioning and provision of mental health advocacy needs to recognize the distinct experiences of African and Caribbean men and develop capacity in the range of organizations to ensure equitable access.     

Exploring the influence of service user involvement on health and social care services for cancer

Background Service user involvement in health and social care is a key policy driver in the UK. In cancer care it is central to developing services which are effective, responsive and accessible to patients. Cancer network partnership groups are set up to enable joint working between service users and health care professionals and to drive service improvements. Aims and objectives The aim of this study was to explore the influence of the cancer network partnership groups’ service user involvement activities on cancer care. Design This was a qualitative study involving documentary analysis and in‐depth case studies of a sample of partnership groups. Setting and participants Five partnership groups were purposively selected as case studies from Macmillan regions across the UK; documents were collated from a further five groups. Forty people, including core group members and key stakeholders in cancer services, were interviewed. Results and conclusions The evidence from this study suggests that cancer network partnership groups are at their most influential at ‘grass roots’ level – contributing to patient information resources, enhancing access to services, and improving care environments. While such improvements are undoubtedly important to patients, the groups’ aim is to influence strategic changes, for example in cancer care commissioning or macro‐level policy decision‐making. The evolution of open, participatory relationships between service users and professionals, and recognition of the value of experiential knowledge are seen as key factors in influencing cancer care. The provision of dedicated resources to strengthen service user involvement activities is also vital.     

Research gaps in routine health information system design barriers to data quality and use in low‐ and middle‐income countries: A literature review

Despite the potential impact of health information system (HIS) design barriers on health data quality and use and, ultimately, health outcomes in low‐ and middle‐income countries (LMICs), no comprehensive literature review has been conducted to study them in this context. We therefore conducted a formal literature review to understand system design barriers to data quality and use in LMICs and to identify any major research gaps related understanding how system design affects data use. We conducted an electronic search across 4 scientific databases—PubMed, Web of Science, Embase, and Global Health—and consulted a data use expert. Following a systematic inclusion and exclusion process, 316 publications (316 abstracts and 18 full papers) were included in the review. We found a paucity of scientific publications that explicitly describe system design factors that hamper data quality or data use for decision making. Although user involvement, work flow, human‐computer interactions, and user experience are critical aspects of system design, our findings suggest that these issues are not discussed or conceptualized in the literature. Findings also showed that individual training efforts focus primarily on imparting data analysis skills. The adverse impact of HIS design barriers on data integrity and health system performance may be even bigger in LMICs than elsewhere, leading to errors in population health management and clinical care. We argue for integrating systems thinking into HIS strengthening efforts to reduce the HIS design‐user reality gap.     

Social tariffs and democratic choice—Do population‐based health state values reflect the will of the people?

In economic evaluations of health technologies, health outcomes are commonly measured in terms of quality‐adjusted life years (QALYs). QALYs are the product of time and health‐related quality of life. Health‐related quality of life, in turn, is determined by a social tariff, which is supposed to reflect the public's preference over health states. This study argues that, because of the tariff's role in the societal decision‐making process, it should not be understood as merely an operational (statistical) definition of health, but as a major instrument of democratic participation. I outline what implications this might have for both the method used to aggregate individual preferences, and the set of individuals whose preferences should count. Alternative tariff specifications and decision rules are explored, and future research directions are proposed.     

Sex and Relationships Education for Individuals with Cystic Fibrosis: A Service-Based Approach

Increasing life expectancy within cystic fibrosis (CF) raises challenges around previously neglected topics such as sexual and reproductive health (SRH). The study aimed to gather retrospective experiences of service provision around SRH to consider the role of the CF service, age of information provision and unmet needs highlighting possible improvements to provision. A mixed-methods retrospective survey-based design was employed. An Adult CF team participated in a consultation session generating survey questions around SRH. A 20-item online survey was constructed and disseminated to adult CF patients. Unmet needs were found in SRH provision in pediatric and adult CF services, with further information required by patients on topics including parenthood and fertility. Results support previous research findings highlighting the need for standardized provision around SRH. Age of SRH provision suggested individual differences in need within the pediatric service. Further research could explore format and specific age of SRH information provision.     

An exploration of parents' and young people's perspectives of hospice support

Background Hospices are an important component of children's palliative care provision and increasing numbers of children/young people with life‐limiting conditions mean that the demand placed on them for support is likely to increase. However, there has been a lack of published research examining how families experience the support provided by children's hospices. Methods The aim of the study was to investigate parents' and young people's perceptions of hospice support and identify how support could be improved. A mixed‐method approach was used involving a postal survey of families and in‐depth qualitative interviews with a purposively sampled subsample of parents and young people. Results A total of 108 (49.8% response rate) questionnaires were returned and interviews were conducted with 12 parents and seven young people. Families were highly satisfied with the support provided in terms of quality of care; interpersonal qualities of the staff; the individualized, family‐focused approach; accessibility of support and involvement in decision making. Young people valued the opportunity to meet with other young people and take part in different activities. For parents the provision of a break from caring was the main way in which they were supported although they felt they wanted more of this form of support. A consistent theme in relation to support for young people and siblings was the need to develop facilities, activities and bereavement support specifically for teenagers/young people. Conclusions Parents value a model of care that provides holistic, family‐focused support that is responsive to individual needs and which promotes control and active involvement in decision making. The key challenge now is to respond to increasing need and a changing population of users.     

Communicating health decisions: an analysis of messages posted to online prostate cancer forums

Background Experiential websites such as message forums and blogs allow Prostate Cancer (PCa) patients to communicate their health decisions to peers. The issues surrounding this form of indirect involvement in public health are little understood. Objective This paper explores the types of decision‐making processes that people are exposed to on PCa online message boards. The kinds of treatment choices patients are making and the reports of their decision‐making processes to peers through an online environment are examined in the context of the Heuristic Systematic Model. Method Messages about treatment decision making were collected from four PCa websites. In total, 137 messages were selected from blogs and online forums and their decision‐making processes coded. Results Men looking online for information about treatment options for PCa are exposed to a range of decision‐making processes. Just under half (49.6%) of the messages reported non‐systematic decision processes, with deferral to the doctor and proof of cancer removal being the most common. For systematic processing (36.5%), messages most commonly considered treatment outcomes and side‐effects. Processes did not vary between the blogs and online forums. Discussion and conclusion Compared to previous studies far fewer messages reported non‐systematic decision processes and only a small number of messages reflected lay beliefs or misbeliefs about PCa treatment. Implications for men and their clinicians of seeking health information online are discussed.     

Involving consumers in a needs-led research programme: a pilot project

Objectives To describe the methods used for involving consumers in a needs‐led health research programme, and to discuss facilitators, barriers and goals. Design In a short action research pilot study, we involved consumers in all stages of the Health Technology Assessment (HTA) Programme: identifying and prioritizing research topics; commissioning and reporting research; and communicating openly about the programme. We drew on the experience of campaigning, self‐help and patients’ representative groups, national charities, health information services, consumer researchers and journalists for various tasks. We explored consumer literature as a potential source for research questions, and as a route for disseminating research findings. These innovations were complemented by training, one‐to‐one support and discussion. A reflective approach included interviews with consumers, co‐ordinating staff, external observers and other programme contributors, document analysis and multidisciplinary discussion (including consumers) amongst programme contributors. Results When seeking research topics, face‐to‐face discussion with a consumer group was more productive than scanning consumer research reports or contacting consumer health information services. Consumers were willing and able to play active roles as panel members in refining and prioritizing topics, and in commenting on research plans and reports. Training programmes for consumer involvement in service planning were readily adapted for a research programme. Challenges to be overcome were cultural divides, language barriers and a need for skill development amongst consumers and others. Involving consumers highlighted a need for support and training for all contributors to the programme. Conclusions Consumers made unique contributions to the HTA Programme. Their involvement exposed processes which needed further thought and development. Consumer involvement benefited from the National Co‐ordinating Centre for Health Technology Assessment (NCCHTA) staff being comfortable with innovation, participative development and team learning. Neither recruitment nor research capacity were insurmountable challenges, but ongoing effort is required if consumer involvement is to be sustained.