Consumer engagement in health care policy, research and services: A systematic review and meta-analysis of methods and effects.

To assess the effects of consumer engagement in health care policy, research and services. We updated a review published in 2006 and 2009 and revised the previous search strategies for key databases (The Cochrane Central Register of Controlled Trials; MEDLINE; EMBASE; PsycINFO; CINAHL; Web of Science) up to February 2020. Selection criteria included randomised controlled trials assessing consumer engagement in developing health care policy, research, or health services. The International Association for Public Participation, Spectrum of Public Participation was used to identify, describe, compare and analyse consumer engagement. Outcome measures were effects on people; effects on the policy/research/health care services; or process outcomes. We included 23 randomised controlled trials with a moderate or high risk of bias, involving 136,265 participants. Most consumer engagement strategies adopted a consultative approach during the development phase of interventions, targeted to health services. Based on four large cluster-randomised controlled trials, there is evidence that consumer engagement in the development and delivery of health services to enhance the care of pregnant women results in a reduction in neonatal, but not maternal, mortality. From other trials, there is evidence that involving consumers in developing patient information material results in material that is more relevant, readable and understandable for patients, and can improve knowledge. Mixed effects are reported of consumer-engagement on the development and/or implementation of health professional training. There is some evidence that using consumer interviewers instead of staff in satisfaction surveys can have a small influence on the results. There is some evidence that consumers may have a role in identifying a broader range of health care priorities that are complementary to those from professionals. There is some evidence that consumer engagement in monitoring and evaluating health services may impact perceptions of patient safety or quality of life. There is growing evidence from randomised controlled trials of the effects of consumer engagement on the relevance and positive outcomes of health policy, research and services. Health care consumers, providers, researchers and funders should continue to employ evidence-informed consumer engagement in their jurisdictions, with embedded evaluation. Systematic review registration: PROSPERO CRD42018102595.

The impact of receiving treatment for cancer at a large metropolitan teaching hospital as recorded by patients using unstructured journals.

The aim was to obtain patients' experiences of the cancer treatment pathway at a tertiary teaching hospital using unstructured journals to enable health care professionals to be educated on how to improve patient care. Most of 38 patients (22 females and 16 males), average age of 58 (range 29-80), who returned diaries were starting chemotherapy for a range of cancers. Data entries were transcribed and entered into the NVIVO software to facilitate thematic analysis. Women wrote more, and more often than men, and disclosed more. For most, physical side effects dominated, comprising 25-75 % of diary entries. The most commonly mentioned were fatigue (74 %), pain (63 %), sleep disturbances (50 %), nausea (45 %) and changes in appetite (45 %). Collectively, 22 patients reported 261 separate emotional reactions including depression, anger, guilt, shame, grief, panic and confusion. The treatment environment, including personnel, impacted upon patients. Where survival is unpredictable, evidence of consistency of practitioners' approaches attains heightened significance.