Patient Involvement In Health Care Decisions Research Articles

"It's Like A Partnership": Exploring the Primary Care Experiences and Patient-Defined Goals of People Who Use Drugs.

Primary care is an important yet underutilized resource in addressing the overdose crisis. Previous studies have identified important aspects of primary care for people who use drugs (PWUD) and have found patient involvement in healthcare decisions and goal-setting to be especially critical. However, there has been limited research describing the primary care goals of PWUD. In harm reduction settings, where it is imperative that PWUD set their own goals, this research gap becomes especially relevant. To explore how PWUD navigate primary care with a focus on understanding their primary care goals. A qualitative study using semi-structured interviews. PWUD currently engaged in primary care at the Respectful and Equitable Access to Comprehensive Healthcare (REACH) Program, a harm reduction-based primary care program in New York City. Between June 2022 and August 2022, we conducted 17 semi-structured interviews. Informed by phenomenology, transcripts were coded using both inductive and deductive codes and themes were developed using thematic analysis approaches. Phenomenological analysis identified four core components that, together, created an experience that participants described as "a partnership" between patient and provider: (1) patient-provider collaboration around patient-defined healthcare goals; (2) support provided by harm reduction-based approaches to primary care anchored in incrementalism and flexibility; (3) care teams' ability to address healthcare system fragmentation; and (4) the creation of social connections through primary care. This holistic partnership fostered positive primary care experiences and supported participants' self-defined care goals, thereby facilitating meaningful care outcomes. To best meet the primary care goals of PWUD, these findings underscore the importance of primary care providers and programs facilitating such partnerships through organizational-level support anchored in harm reduction. Future research should explore how these experiences in primary care affect patient health outcomes, ultimately shaping best practices in the provision of high-quality primary care for PWUD.

Medical student attitudes to patient involvement in healthcare decision-making and research

ObjectivePatient involvement is used to describe the inclusion of patients as active participants in healthcare decision-making and research. This study aimed to investigate incoming year 1 medical (MBChB) students’ attitudes...

Updates on the multidisciplinary management of elderly patients with rectal cancer: a narrative review.

The burden of rectal cancer in the elderly population continues to increase. The aim of this narrative review is to assess evidence updates on the management of elderly patients with rectal cancer. The subject of rectal cancer in patients ≥70 years old was divided into different topics and, based on the research items, the literature review searched relevant studies from MEDLINE (via PubMed), Cochrane Central Register of Controlled Trials, and EMBASE between January 2000 and November 2022. Systematic reviews with or without meta-analyses, narrative reviews, randomized trials, and non-randomized cohort studies were included. For the fit elderly patient with preserved sphincter tone, standard-of-care surgical therapy should be pursued, whereas frail patients with more advanced disease could benefit from local excision as a palliative approach in combination with neoadjuvant chemoradiotherapy or more intensive radiotherapy options. Laparoscopic total mesorectal excision is recommended after carefully evaluating the patient's medical history, performance status, and tumor characteristics. Conversely, local excision can be implemented when balancing frailty, oncological outcomes, functional outcomes, and life expectancy. A watch and wait strategy can be considered in selected frail elderly patients with low-rectal tumors in case of complete clinical response after neoadjuvant chemoradiotherapy, with a stringent surveillance protocol, at least in the first three years. In elderly patients with rectal cancer, the adoption of strategies for patient involvement in healthcare decision-making is essential, as well as the evaluation of the social background and a discussion with the patient about therapeutic modalities.

Adapting ENABLE for patients with advanced cancer and their family caregivers in Singapore: a qualitative formative evaluation

BackgroundENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model.MethodsQualitative formative evaluation with a thematic analysis approach in two hospitals in Singapore, involving patients (n = 10), family caregivers (n = 11) and healthcare professionals (n = 10) who care for patients with advanced cancer. Semi-structured interviews were conducted to explore (i) the main needs and challenges facing individuals with advanced cancer and their family caregivers; (ii) patient involvement in healthcare decision making; and (iii) content and delivery of ENABLE.ResultsWhile physical needs were largely well met, participants expressed that psychosocial care was delivered too late in the illness trajectory. Healthcare decision making approaches varied from a patient-centred shared decision-making model to a family-centred model where patients may not know their cancer diagnosis and prognosis. The content was considered to be relevant, comprehensive and practical; financial assistance, adjustment to body image, and evaluation of complementary therapy were also recommended. Face-to-face rather than telephone sessions were preferred to facilitate rapport building.ConclusionsENABLE was broadly acceptable with some modifications, including adjusting the content to ensure it can be delivered even if the patient is not fully aware of cancer diagnosis and delivering the first session face-to-face with flexibility for subsequent sessions.

Is greater patient involvement associated with higher satisfaction? Experimental evidence from a vignette survey

BackgroundPatient-centredness is an essential quality parameter of modern healthcare. Accordingly, involving patients in decisions about care is required by international laws and an increasing number of medical codes and standards....

Protocol for systematic review: patient decision aids for total hip and knee arthroplasty decision-making

BackgroundTotal hip and knee arthroplasty are a highly performed surgery; however, patient satisfaction with surgery results and patient involvement in the decision-making process remains low. Patient decision aids (PtDAs) are tools used in clinical practices to facilitate active patient involvement in healthcare decision-making. Nonetheless, PtDA effects have not been systematically evaluated for hip and knee total joint arthroplasty (TJA) decision-making. The aim of this systematic review is to determine the effect of patient decision aids compared to alternative of care on quality and process of decision-making when provided to adults with hip and knee osteoarthritis considering primary elective TJA.MethodsThis systematic review will follow the Cochrane Handbook for Systematic Reviews. This protocol was reported based on the PRISMA-P checklist guidelines. Studies will be searched in CINAHL, MEDLINE, Embase, PsycINFO, and Web of Science. Eligible studies will be randomized control trial (RCT) evaluating the effect of PtDA on TJA decision-making. Descriptive and meta-analysis of outcomes will include decision quality (knowledge and values-based choice), decisional conflict, patient involvement, decision-making process satisfaction, actual decision made, health outcomes, and harm(s). Risk of bias will be evaluated with Cochrane’s risk of bias tool for RCTs. Quality and strength of recommendations will be appraised with Grades of Recommendation, Assessment, Development and Evaluation (GRADE).DiscussionThis review will provide a summary of RCT findings on PtDA effect on decision-making quality and process of adults with knee and hip osteoarthritis considering primary elective TJA. Further, it will provide evidence comparing different types of PtDA used for TJA decision-making. This review is expected to inform further research on joint replacement decision-making quality and processes and on ways PtDAs facilitate shared decision-making for orthopedic surgery.Systematic review registrationPROSPERO CRD42020171334

A Cross-Sectional Study Examining the Relationship between Patient Information Level and Patient Participation in Healthcare Decisions and Health Management

Introduction In 2018, Lymphoma Coalition (LC) analysed data from the 2018 LC Global Patient Survey (GPS) on Lymphomas and CLL and determined that 'adequately informed' patients reported more positive healthcare experiences. From the 2018 survey, it was evident that many patients with lymphoma/CLL left their initial diagnosis meeting with a poor understanding of many aspects of their treatment and care plan. This can translate negatively across many areas of the patient experience. LC used the 2020 GPS to further assess correlations relating to information provision and the patient experience. This study examines the relationship between the level of information patients with lymphoma/CLL received at diagnosis, and their level of participation in healthcare decisions and health management. Methodology This study is a sub-analysis of the 2020 LC GPS, which was available in 19 languages and was hosted online from 13 January 2020 until 13 March 2020. Globally, there were 11,878 respondents made up of 9,179 patients and 2,699 caregivers. This study includes patient data only. Patients who felt they received the right amount of information at diagnosis (n=5159) were compared against patients who did not receive enough information (n=3285). Demographics of the two patient groups were examined, and questions relating to patient involvement in healthcare decision-making, disease management, and overall experience were analysed. Differences in proportions were tested using chi-square tests (p=0.05) and odds ratios with 95% CI. Statistical analyses were performed with IBM SPSS v21. Results The two patient groups (right amount of information 'RA', not enough information 'NE') were similar in their distribution of age and area of residence. The majority of patients in both groups were aged 50 years or older (71% RA; 60% NE) and lived in city/urban areas (47% RA; 55% NE). There were slightly more females than males in the NE group (61% female, 39% male) compared to the RA group (55% female, 45% male). Additionally, the majority of patients in the RA group lived in Europe (56%) while the majority of patients in the NE group lived in Asia-Pacific (44%). Patients were asked if they are involved as much as they want to be in decisions about their care and treatment; the majority of patients in both groups said 'yes' (94% RA; 79% NE). However, only 4% of RA patients reported 'no, but I would like to be more involved', compared to 19% of NE patients. Patients were asked to indicate how much they agree or disagree with statements relating to their role in making decisions about their healthcare (see Table 1). Compared to RA patients, NE patients were at least twice as likely to disagree that they seek clarification when they do not understand (OR=2.88), that they are confident in communicating concerns to the doctor (OR=5.17), that they have good conversations with the doctor about their care and treatment plan (OR=8.29), and that they are confident in their ability to positively impact their health (OR=2.12). A greater proportion of RA patients reported agreeing with all of these statements. Further, compared to RA patients, NE patients were twice (OR=2.45) as likely to agree to feeling overwhelmed by managing their health and condition (Table 1). Patients were asked questions relating to disease management and overall patient experience (Table 2). Compared to RA patients, NE patients were more likely to disagree that they are confident in their ability to find reliable information (OR=1.69), or in their ability to get the information they need from their doctor (OR=9.58). NE patients were also more likely to disagree that they are confident in their ability to keep their symptoms/side effects from interfering with the things they want to do (OR=1.86). A greater proportion of RA patients reported agreeing with all of these statements. Conclusion Compared to patients who felt they received the right amount of information at diagnosis, those who did not receive enough information were more likely to report disagreeing with all positive statements relating to involvement in healthcare decision-making, disease management, and overall experience. It was evident that patients who had knowledge surrounding their condition and care plan were more inclined to be confident in taking an active role in managing their health and condition. Access to credible timely information is therefore an important aspect to a successful patient experience. Disclosures Dren: Pfizer Inc: Research Funding; AbbVie Corporation: Research Funding; Takeda Oncology: Research Funding. Warwick:Pfizer Inc: Research Funding; AbbVie Corporation: Research Funding; Takeda Oncology: Research Funding.

Perceived problems with involvement in decision making about breast cancer treatment and care: A cross-sectional study

ObjectiveTo examine perceived problems with involvement in medical decision making among people with breast cancer from various phases of the cancer care trajectory. MethodsBreast cancer outpatients (n = 663) from 13 treatment centres completed a survey of perceived involvement in treatment and care decisions in the last month, psychological distress, demographic and clinical factors. A subsample (n = 98) from three centres completed a follow-up survey on preferred and perceived treatment decision making roles. ResultsOverall, 112 (17 %) of 663 respondents from 13 oncology centres had experienced problems with involvement in decision making about their treatment and care in the last month, and of these, 36 (32 %) reported an unmet need for help with this problem. Elevated psychological distress was associated with 5.7 times the odds of reporting this problem and 6.6 times the odds of reporting this unmet need in the last month. Among the follow-up subsample (n = 98), 39% (n = 38) reported discordance between preferred and perceived role in a major treatment decision. Psychological distress was not associated with this outcome. ConclusionPsychological distress was significantly associated with recently experiencing problems with involvement in treatment and care decisions, but not with misalignment of preferred and perceived roles in prior major treatment decisions. Practice implicationsThere is a need to maintain support for patient involvement in healthcare decisions across the cancer care continuum.

Multiple health literacy dimensions are associated with physicians’ efforts to achieve shared decision-making

ObjectivesShared decision-making (SDM) in health care is widely encouraged. However, for SDM to occur patients need to be able to obtain, understand and apply medical information. Our aim was to assess the relationship between health literacy (HL), numeracy and SDM (using French translations of validated measures). MethodsA cross-sectional survey using a self-administered online questionnaire was proposed to all members of the Seintinelles association. Several scales were used to measure HL (FCCHL and 3HLQ/SILS), numeracy (SNS-3), the SDM process (CollaboRATE) and explore their inter-relationships. ResultsData from 2 299 respondents (96.7% women, 46.1% with a history of cancer) were analysed. All measurement scales showed adequate psychometric properties. Functional HL, communicative HL and numeracy were positively associated with SDM while no significant relation was observed between critical HL and SDM. Furthermore, perceived difficulties in asking physicians’ questions and deprivation were negatively associated with SDM. ConclusionPatient support to reach SDM requires high levels of HL, particularly in the functional and communicative domains. Efforts must be made to improve access and understanding of health information. Practice implicationsBrief self-reported measures could be used to screen for low levels of health literacy, tailor information accordingly and improve patient involvement in healthcare decision-making.

Co-production to inform clinical commissioning in COPD: an evaluation of Working Together for Change

Rationale, aims and objectives: Patient involvement in healthcare decision-making is often limited to consultation. Co-production is an approach that empowers patients to work collaboratively with providers as agents of change. The objective of this study was to explore participants’ experiences and satisfaction with a co-production process, Working Together for Change (WTfC), used to inform the commissioning of services for people living with Chronic Obstructive Pulmonary Disease (COPD). Method: Mixed methods developmental service evaluation drawing primarily on qualitative data from semi-structured interviews. Setting and participants: Community-based intervention with COPD patients, carers, commissioners and providers of COPD services. Intervention: One-to-one reviews with 45 patients identified what was working, not working and what was important for the future regarding COPD management. In 2 one-day workshops attended by 14 patients and carers and 17 professionals this information was analysed to inform commissioning priorities.Results: Participant satisfaction was high. Thematic analysis identified 3 themes: (1) an engaging experience, (2) a constructive process enabled by strong patient presence, real patient experiences, collaboration, sense of freedom, a range of contributions and commitment & (3) personal gains from the patient and carer voice being counted, mutual understanding, seeing the value of patient involvement and learning and sharing. Some concerns were raised about the process and suggestions made for improvement.Conclusions: WTfC was an acceptable process to inform COPD commissioning activity and resulted in an agreed and priorities action plan for COPD service commissioning. It supported collaborative working, egalitarian relationships and mutual learning between patients, carers and professionals. As a standalone activity it was not possible to evaluate the value of the outputs to commissioners or the objective impact but it provided a powerful introduction to co-production methods. WTfC can be an impactful starting point for embedding co-production into the commissioning process.

Shared decision making in Brazil: Concrete efforts to empower the patients' voice

Patient involvement in healthcare decisions has grown in Brazil at three different levels: 1) the macro level, which includes the patient actively influencing legislation and regulation of medical care as well as political changes in the process of care itself; 2) the meso level, which includes institutions that aim to improve information, empowerment and counseling to patients, and 3) the micro level, which focuses on the actual decision-making process that takes place within patient-physician encounter. In Brazil, the macro and meso levels are stronger than the micro one. In this paper, the practical efforts to engage patients in the center of their own care are presented. In order to do that, an overview on the National Humanization Policy and the Brazilian patient's movement is provided.

Pfizer‐sponsored satellite symposium at the European Haemophilia Consortium (EHC) Congress

The annual European Haemophilia Consortium (EHC) Conference 2013, held in Bucharest, Romania, 4-5 October, was attended by over 200 patient advocates, policy makers and healthcare professionals from across Europe. Pfizer sponsored a satellite symposium at the conference entitled: 'Changing the policy landscape: haemophilia patient involvement in healthcare decision making', drawing on expertise from a panel specialising in the field of rare disease. The symposium, chaired by Declan Noone (Irish Haemophilia Society) on behalf of Brian O'Mahony (Irish Haemophilia Society), examined the current policy and economic landscape in Europe and how pressures on healthcare budgets are impacting haemophilia care. The symposium also discussed the importance of representing the 'patient voice' in key policy decisions through identification of opportunities for patient advocacy group engagement. Alastair Kent (Genetic Alliance UK) opened the session by highlighting that the downturn in the global economy has refocused decision-making in healthcare, moving cost-effectiveness of healthcare interventions higher up the agenda for decision-makers and payers. In light of this, patient engagement is more important than ever, particularly in healthcare technology assessments (HTAs), to ensure that patient and family opinions are represented. Ségolène Aymé (Orphanet) built upon this in her session discussing the rare disease policy landscape and regional initiatives taking place in Europe, including the EUROPLAN process, for which the participation of the haemophilia community is critical. Finally, Declan Noone provided an example of how the EHC, through its survey of 35 countries, demonstrated not only the considerable differences in the quality of care available for people with haemophilia across Europe, but also how the data from the survey could be used as a powerful advocacy tool to initiate change in countries with lower gross domestic product (GDP) that face healthcare spending challenges. The meeting closed with a 'call to action' for patient advocacy groups, focusing on avenues by which patients can become involved in the decision-making for policies that will ultimately affect access to, and quality of, haemophilia care in their country.

Patient Involvement in Health Care Decision Making: A Review

Background:Patient participation means involvement of the patient in decision making or expressing opinions about different treatment methods, which includes sharing information, feelings and signs and accepting health team instructions.Objectives:Given the importance of patient participation in healthcare decision making which empowers patients and improves services and health outcomes, this study was performed to review previous studies on patient participation in healthcare decision making.Materials and Methods:To prepare this narrative review article, researchers used general and specific search engines, as well as textbooks addressing this subject for an in-depth study of patient involvement in healthcare decision-making. As a result, 35 (out of 100 relevant) articles and also two books were selected for writing this review article.Results:Based on the review of articles and books, topics were divided into six general categories: definition of participation, importance of patient participation, factors influencing participation of patients in healthcare decisions, method of patient participation, tools for evaluating participation, and benefits and consequences of patient participation in health care decision-making.Conclusions:In most studies, factors influencing patient participation consisted of: factors associated with health care professionals such as doctor-patient relationship, recognition of patient’s knowledge, allocation of sufficient time for participation, and also factors related to patients such as having knowledge, physical and cognitive ability, and emotional connections, beliefs, values and their experiences in relation to health services.

An overview of patient involvement in healthcare decision-making: a situational analysis of the Malaysian context

BackgroundInvolving patients in decision-making is an important part of patient-centred care. Research has found a discrepancy between patients’ desire to be involved and their actual involvement in healthcare decision-making. In Asia, there is a dearth of research in decision-making. Using Malaysia as an exemplar, this study aims to review the current research evidence, practices, policies, and laws with respect to patient engagement in shared decision-making (SDM) in Asia.MethodsIn this study, we conducted a comprehensive literature review to collect information on healthcare decision-making in Malaysia. We also consulted medical education researchers, key opinion leaders, governmental organisations, and patient support groups to assess the extent to which patient involvement was incorporated into the medical curriculum, healthcare policies, and legislation.ResultsThere are very few studies on patient involvement in decision-making in Malaysia. Existing studies showed that doctors were aware of informed consent, but few practised SDM. There was limited teaching of SDM in undergraduate and postgraduate curricula and a lack of accurate and accessible health information for patients. In addition, peer support groups and 'expert patient’ programmes were also lacking. Professional medical bodies endorsed patient involvement in decision-making, but there was no definitive implementation plan.ConclusionIn summary, there appears to be little training or research on SDM in Malaysia. More research needs to be done in this area, including baseline information on the preferred and actual decision-making roles. The authors have provided a set of recommendations on how SDM can be effectively implemented in Malaysia.

Making information ‘relevant’: General Practitioner judgments and the production of patient involvement

Sociological work that has engaged with the issue of patient involvement in health care suggests it needs to be recognised that decision-making is not simply an individual cognitive act contained in a single consultation, but a process that is distributed across multiple encounters in relation to a range of agents and non-human actors. Drawing on such conceptualisations of decision-making, and based on semi-structured interviews with 24 General Practitioners (GPs) in the United Kingdom about the prescription of statins for the primary prevention of cardiovascular disease, this paper explores the preemptive work that GPs perform when attempting to achieve patient involvement in healthcare decisions. The paper identifies a set of repertoires through which they evaluate and coordinate often contradictory forms of knowledge, transforming them into information that they think is relevant to patients, and which will potentially facilitate meaningful involvement in healthcare decisions. The study concludes by suggesting that such fluid and context sensitive practices are a necessary strategy for navigating complex health environments, which can be justified and underpinned by a relational model of autonomy. However, work needs to be done to explore how such judgments can be calibrated to mesh with the decision-making preferences of patients and what new approaches and standards for practice this would require.

The confidence of speech-language pathology students regarding communicating with people with aphasia.

BackgroundAphasia is an acquired language disorder that can present a significant barrier to patient involvement in healthcare decisions. Speech-language pathologists (SLPs) are viewed as experts in the field of communication. However, many SLP students do not receive practical training in techniques to communicate with people with aphasia (PWA) until they encounter PWA during clinical education placements.MethodsThis study investigated the confidence and knowledge of SLP students in communicating with PWA prior to clinical placements using a customised questionnaire. Confidence in communicating with people with aphasia was assessed using a 100-point visual analogue scale. Linear, and logistic, regressions were used to examine the association between confidence and age, as well as confidence and course type (graduate-entry masters or undergraduate), respectively. Knowledge of strategies to assist communication with PWA was examined by asking respondents to list specific strategies that could assist communication with PWA.ResultsSLP students were not confident with the prospect of communicating with PWA; reporting a median 29-points (inter-quartile range 17–47) on the visual analogue confidence scale. Only, four (8.2%) of respondents rated their confidence greater than 55 (out of 100). Regression analyses indicated no relationship existed between confidence and students‘ age (p = 0.31, r-squared = 0.02), or confidence and course type (p = 0.22, pseudo r-squared = 0.03). Students displayed limited knowledge about communication strategies. Thematic analysis of strategies revealed four overarching themes; Physical, Verbal Communication, Visual Information and Environmental Changes. While most students identified potential use of resources (such as images and written information), fewer students identified strategies to alter their verbal communication (such as reduced speech rate).ConclusionsSLP students who had received aphasia related theoretical coursework, but not commenced clinical placements with PWA, were not confident in their ability to communicate with PWA. Students may benefit from an educational intervention or curriculum modification to incorporate practical training in effective strategies to communicate with PWA, before they encounter PWA in clinical settings. Ensuring students have confidence and knowledge of potential communication strategies to assist communication with PWA may allow them to focus their learning experiences in more specific clinical domains, such as clinical reasoning, rather than building foundation interpersonal communication skills.

Personalised risk communication for informed decision making about taking screening tests

There is a trend towards greater patient involvement in healthcare decisions. Although screening is usually perceived as good for the health of the population, there are risks associated with the tests involved. Achieving both adequate involvement of consumers and informed decision making are now seen as important goals for screening programmes. Personalised risk estimates have been shown to be effective methods of risk communication. To assess the effects of personalised risk communication on informed decision making by individuals taking screening tests. We also assess individual components that constitute informed decisions. Two authors searched the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library, Issue 3, 2012), MEDLINE (OvidSP), EMBASE (OvidSP), CINAHL (EbscoHOST) and PsycINFO (OvidSP) without language restrictions. We searched from 2006 to March 2012. The date ranges for the previous searches were from 1989 to December 2005 for PsycINFO and from 1985 to December 2005 for other databases. For the original version of this review, we also searched CancerLit and Science Citation Index (March 2001). We also reviewed the reference lists and conducted citation searches of included studies and other systematic reviews in the field, to identify any studies missed during the initial search. Randomised controlled trials incorporating an intervention with a 'personalised risk communication element' for individuals undergoing screening procedures, and reporting measures of informed decisions and alsocognitive, affective, or behavioural outcomes addressing the decision by such individuals, of whether or not to undergo screening. Two authors independently assessed each included trial for risk of bias, and extracted data. We extracted data about the nature and setting of interventions, and relevant outcome data. We used standard statistical methods to combine data using RevMan version 5, including analysis according to different levels of detail of personalised risk communication, different conditions for screening, and studies based only on high-risk participants rather than people at 'average' risk. We included 41 studies involving 28,700 people. Nineteen new studies were identified in this update, adding to the 22 studies included in the previous two iterations of the review. Three studies measured informed decision with regard to the uptake of screening following personalised risk communication as a part of their intervention. All of these three studies were at low risk of bias and there was strong evidence that the interventions enhanced informed decision making, although with heterogeneous results. Overall 45.2% (592/1309) of participants who received personalised risk information made informed choices, compared to 20.2% (229/1135) of participants who received generic risk information. The overall odds ratios (ORs) for informed decision were 4.48 (95% confidence interval (CI) 3.62 to 5.53 for fixed effect) and 3.65 (95% CI 2.13 to 6.23 for random effects). Nine studies measured increase in knowledge, using different scales. All of these studies showed an increase in knowledge with personalised risk communication. In three studies the interventions showed a trend towards more accurate risk perception, but the evidence was of poor quality. Four out of six studies reported non-significant changes in anxiety following personalised risk communication to the participants. Overall there was a small non-significant decrease in the anxiety scores. Most studies (32/41) measured the uptake of screening tests following interventions. Our results (OR 1.15 (95% CI 1.02 to 1.29)) constitute low quality evidence, consistent with a small effect, that personalised risk communication in which a risk score was provided (6 studies) or the participants were given their categorised risk (6 studies), increases uptake of screening tests. There is strong evidence from three trials that personalised risk estimates incorporated within communication interventions for screening programmes enhance informed choices. However the evidence for increasing the uptake of such screening tests with similar interventions is weak, and it is not clear if this increase is associated with informed choices. Studies included a diverse range of screening programmes. Therefore, data from this review do not allow us to draw conclusions about the best interventions to deliver personalised risk communication for enhancing informed decisions. The results are dominated by findings from the topic area of mammography and colorectal cancer. Caution is therefore required in generalising from these results, and particularly for clinical topics other than mammography and colorectal cancer screening.

Exploring patient involvement in healthcare decision making across different education and functional health literacy groups

Education and health literacy potentially limit a person's ability to be involved in decisions about their health. Few studies, however, have explored understandings and experiences of involvement in decision making among patients varying in education and health literacy. This paper reports on a qualitative interview study of 73 men and women living in Sydney, Australia, with varying education and functional health literacy levels. Participants were recruited from a community sample with lower educational attainment, plus an educated sample of University of Sydney alumni. The transcripts were analysed using the 'Framework' approach, a matrix-based method of thematic analysis. We found that participants with different education conceptualised their involvement in decision making in diverse ways. Participants with higher education appeared to conceive their involvement as sharing the responsibility with the doctor throughout the decision-making process. This entailed verifying the credibility of the information and exploring options beyond those presented in the consultation. They also viewed themselves as helping others in their health decisions and acting as information resources. In contrast, participants with lower education appeared to conceive their involvement in terms of consenting to an option recommended by the doctor, and having responsibility for the ultimate decision, to agree or disagree with the recommendation. They also described how relatives and friends sought information on their behalf and played a key role in their decisions. Both education groups described how aspects of the patient-practitioner relationship (e.g. continuity, negotiation, trust) and the practitioner's interpersonal communication skills influenced their involvement. Health information served a variety of needs for all groups (e.g. supporting psychosocial, practical and decision support needs). These findings have practical implications for how to involve patients with different education and literacy levels in decision making, and highlight the important role of the patient-practitioner relationship in the process of decision making.

Patient involvement in healthcare decisions is hard on doctors

Patient involvement in healthcare decisions is hard on doctors