Consumer involvement in cancer research: example from a Cancer Network

Background

The involvement of consumers and the general public in improving cancer services is an important component of health services. However, consumer involvement in cancer research is relatively unexplored. The objective of this study was to explore different ways of involving consumers in cancer research in one regional network.

Methods

Thames Valley Cancer Network Consumer Research Partnership (CRP) group was formed in 2009. The group consists of consumers and professionals to help in promoting consumer involvement in Cancer Research in the Thames Valley. This study evaluated the project of consumer involvement in cancer research in the Thames Valley from March 2010 to March 2011. We used different indices to judge the level of consumer involvement: number of projects involving consumers through the group, types of projects, level of involvement (ranged from consultation on research documents to collaborating in preparing grant applications) and the methods of involving consumers in cancer research.

Results

Fifteen projects were submitted to the CRP group during the 12‐month period studied. Of these, eight projects were clinical trials, three were qualitative research projects, two were patients'' surveys and two were non‐randomized interventional studies. Seven projects requested consumer involvement on patient information sheets for clinical trials. Of these seven applications, three also requested consumers'' help in designing research questionnaires and another three requested that consumers should be involved in their project management group. In addition, four projects involved consumers in the proposal development phase and another four projects asked for advice on how to increase trial recruitment, conduct patient interviews or help with grant applications.

Conclusions

The creation of the CRP and this audit of its activity have documented consumer involvement in cancer research in the Thames Valley. We have clearly shown that consumers can be involved in designing and managing cancer research projects.     

Consumer participation in Health Maintenance Organizations

Recent health legislation, particularly the Health Maintenance Organization Act, appears to invite the participation of consumers in the governance of health care programs. This represents an opportunity for the community organizer to influence the role of the consumer in health care systems. This paper examines federal policy relating to consumer participation, discusses resulting issues and dilemmas, and offers suggestions for programs to strengthen consumer participation in HMOs.     

Consumer evaluation of hospital foodservice quality: an empirical investigation

PURPOSE: The purpose of this article is to estimate the relationship between acute care consumers' satisfaction with hospital foodservices, foodservice characteristics, demographic and contextual variables. DDESIGN/METHODOLOGY/APPROACH: The acute care hospital foodservice patient satisfaction questionnaire was administered to 2347 patients in Queensland, Australia from 1996-2001. Regression analysis was conducted to measure the influence of 21 foodservice attributes and seven contextual/demographic items on overall foodservice satisfaction. FFINDINGS: Foodservice satisfaction was strongly associated with variety, flavour, meat texture, temperature, meal taste, and menu staff (p < 0.01). Consumers aged 70 years or more rated their overall satisfaction significantly lower than younger consumers (p < 0.01), but no statistically significant differences in overall ratings existed for other contextual or demographic groups. RESEARCH LIMITATIONS/IMPLICATIONS: This new foodservice instrument and the methods of analysis may be generalisable, but application is likely to be context-specific. Further applications of the instrument are required to produce greater confidence in its validity and reliability across different foodservice settings. PRACTICAL IMPLICATIONS: Global statements often used in health service satisfaction surveys (e.g. a single rating of "food quality") provide insufficient information to allow managers to adapt foodservices to suit consumers' preferences. ORIGINALITY/VALUE: Detailed information of the kind produced here is required for the formulation of managerial and sectoral policies to improve the quality of health and consumer nutrition care. The findings are noteworthy and, as far as the literature review showed, no previously published study has produced this level of detail on consumer preferences across foodservice attributes or their relationship to overall foodservice satisfaction.     

Consumer Satisfaction about Hospital Services: A Study from the Outpatient Department of a Private Medical College Hospital at Mangalore

Background:

Consumer satisfaction is an important parameter for assessing the quality of patient care services. There is a need to assess the health care systems regarding the consumer satisfaction as often as possible.

Objectives:

To assess the consumer satisfaction regarding the services provided in our outpatient department in terms of clinical care, availability of services, waiting time, and cost.

Materials and Methods:

A 27-item pre-tested questionnaire was given to 100 patients (caretakers in pediatric patients) at the end of their O.P.D visit from 3 to 4 pm for 5 days from November 7, 2005 to November 11, 2005. The items in the questionnaire referred to particulars of the patients such as age, sex, occupation, department requested, lab, and medical stores. While analyzing, they were grouped into categories like availability, clinical care, waiting time, and cost. The responses were expressed in proportions.

Results:

The availability of services and clinical care was found to be satisfactory. 81% of the respondents found the communication by the doctor good, 97% of the respondents were satisfied about the explanation of the disease by the doctor The average time required for consulting the doctor was 46.5 ± 20.9 min. But when time spent in pharmacy was considered, it was not significantly satisfactory. The cost of investigation was significantly moderate or high in 97% of the respondents.

Conclusions:

Recommendations are required for reduction of time spent in the pharmacy and the cost of investigations to improve consumer satisfaction.     

Consumer Involvement in Restaurant Selection

ABSTRACT

This study evaluates the effect of consumer orientation, consumer psychological involvement, and restaurant attributes on satisfaction with dining in ethnic restaurants. The sample represented 232 consumers. Correlation analysis revealed that the opinion, belief, and behavioral intentions of the active consumer significantly affect satisfaction. For the passive consumer no significant effect was found. Results of the stepwise regression analysis revealed that consumer satisfaction was significantly affected by restaurant attributes. Findings of this study contribute not only to consumer self-concept theory and satisfaction theory but also offers practical implications to the ethnic restaurant industry.     

Free Online Consumer Health Classes

Abstract

The National Library of Medicine (NLM) provides many avenues for consumers to find and evaluate online health information. In addition to the consumer health Web sites NLM has developed, there are numerous online training modules available through The National Network of Libraries of Medicine's “National Training Center and Clearinghouse's Educational Database.” This database lists available classes and provides contact information for libraries across the country that offer training and education in using the NLM Web sites and in finding and evaluating health information online.     

The Role of Affect in Consumer Evaluation of Health Care Services

Health care services are typically consumed out of necessity, typically to recover from illness. While the consumption of health care services can be emotional given that consumers experience fear, hope, relief, and joy, surprisingly, there is little research on the role of consumer affect in health care consumption. We propose that consumer affect is a heuristic cue that drives evaluation of health care services. Drawing from cognitive appraisal theory and affect-as-information theory, this article tests a research model (N = 492) that investigates consumer affect resulting from service performance on subsequent service outcomes.     

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.     

Consumer Health Informatics: The Application of ICT in Improving Patient-Provider Partnership for a Better Health Care

Background

There is a growing interest concerning the potential of ICT solutions that are customized to consumers. This emerging discipline referred to as consumer health informatics (CHI) plays a major role in providing information to patients and the public, and facilitates the promotion of self-management.The concept of CHI has emerged out of the desire of most patients to shoulder responsibilities regarding their health and a growing desire of health practitioners to fully appreciate the potential of the patient.

Aim

To describe the role of ICT in improving the patient-provider partnership in consumer health informatics.

Methods

Systematic reviewing of literature, identification of reference sources and formulation of search strategies and manual search regarding the significance of developed CHI applications in healthcare delivery.

Results

New consumer health IT applications have been developed to be used on a variety of different platforms, including the Web, messaging systems, PDAs, and cell phones. These applications assists patients with self-management through reminders and prompts, delivery of real-time data on a patient’s health condition to patients and providers, web-based communication and personal electronic health information.

Conclusion

New tools are being developed for the purposes of providing information to patients and the public which has enhanced decision making in health matters and an avenue for clinicians and consumers to exchange health information for personal and public use. This calls for corroboration among healthcare organizations, governments and the ICT industry to develop new research and IT innovations which are tailored to the health needs of the consumer.     

Challenges and Opportunities with Empowering Baby Boomers for Personal Health Information Management Using Consumer Health Information Technologies: an Ecological Perspective

“Baby Boomers” (adults born between the years of 1946 and 1964) make up the largest segment of the population in many countries, including the United States (about 78 million Americans) [1]. As Baby Boomers reach retirement age and beyond, many will have increasing medical needs and thus demand more health care resources that will challenge the healthcare system. Baby Boomers will likely accelerate the movement toward patient self-management and prevention efforts. Consumer Health Information Technologies (CHIT) hold promise for empowering health consumers to take an active role in health maintenance and disease management, and thus, have the potential to address Baby Boomers'' health needs. Such innovations require changes in health care practice and processes that take into account Baby Boomers'' personal health needs, preferences, health culture, and abilities to use these technologies. Without foundational knowledge of barriers and opportunities, Baby Boomers may not realize the potential of these innovations for improving self-management of health and health outcomes. However, research to date has not adequately explored the degree to which Baby Boomers are ready to embrace consumer health information technology and how their unique subcultures affect adoption and diffusion. This position paper describes an ecological conceptual framework for understanding and studying CHIT aimed at satisfying the personal health needs of Baby Boomers. We explore existing literature to provide a detailed depiction of our proposed conceptual framework, which focuses characteristics influencing Baby Boomers and their Personal Health Information Management (PHIM) and potential information problems. Using our ecological framework as a backdrop, we provide insight and implications for future research based on literature and underlying theories represented in our model.     

Appraisal Skills,Health Literacy and the Patient-Provider Relationship: Considerations as the Health Care Consumer Turns to the Internet to Inform their Care

Health care consumers increasingly obtain health information from the Internet to inform their health care; the health care consumer, who also has the role of patient, maintains the right to access information from sources of their choosing for this purpose. However, noteworthy considerations exist including information appraisal skills, health literacy and the patient-provider relationship. Awareness and education are warranted to assist the health care consumer in achieving proficiency as they turn to the Internet for health information.     

Consumer information development and use

The availability of informational materials to aid consumer health care purchasing decisions is increasing. Organizations developing and disseminating materials include public- and private-sector employers, providers, purchasing cooperatives, State agencies, counseling programs, and accreditation bodies. Based on case study interviews with 24 organizations, we learned that 10 included consumer satisfaction ratings and performance measures based on medical records. An additional four organizations developed materials with consumer satisfaction ratings exclusively. Printed materials were the most common medium used to convey information to consumers. However, other mechanisms for conveying the information were also employed. On the whole, the materials have not been rigorously evaluated. Evaluations are needed to determine if consumers find the information useful and how different individuals prefer to receive the information.     

Improving health care strategy planning through assessment of perceptions of consumers, providers and administrators

Perceptions of consumers, health care administrators, and physicians regarding health care providers are analyzed. Ratings on 26 dimensions of health care services were obtained from members of the three participant groups using measures of image and satisfaction of both physicians in general, and of specific physicians. Discriminant analysis reveals significantly different perceptions of the health care system among the three groups of respondents. These differences suggest some changes in health care administration which could lead to increased consumer satisfaction and competitive advantages for physicians and health care institutions.     

Consumer advocacy in Medicare HMOs

Rising out-of-pocket health care costs and premiums for Medicare supplemental insurance are driving many beneficiaries out of traditional fee-for-service Medicare and into health maintenance organizations. These consumers give up unrestricted provider choice in exchange for controlled costs and some additional service. However, in the context of weak oversight by the federal Health Care Financing Administration, the push by health plans to increase profits has meant that vulnerable Medicare HMO enrollees may not receive the services and consumer protections required by law.     

Consumer perspectives on information needs for health plan choice

The premise that competition will improve health care assumes that consumers will choose plans that best fit their needs and resources. However, many consumers are frustrated with currently available plan comparison information. We describe results from 22 focus groups in which Medicare beneficiaries, Medicaid enrollees, and privately insured consumers assessed the usefulness of indicators based on consumer survey data and Health Employer Data Information Set (HEDIS)-type measures of quality of care. Considerable education would be required before consumers could interpret report card data to inform plan choices. Policy implications for design and provision of plan information for Medicare beneficiaries and Medicaid enrollees are discussed.     

Mental health research priorities in Australia: a consumer and carer agenda

Background

The perspectives of mental health consumers and carers are increasingly recognised as important to the development and conduct of research. However, research directions are still most commonly developed without consumer and carer input. This project aimed to establish priorities for mental health research driven by the views of consumers and carers in Australia.

Method

The project was conducted in two studies. Firstly, a face-to-face discussion forum held in the Australian Capital Territory (Study 1; n?=?25), followed by a national online survey (Study 2; n?=?70). Participants in both studies were members of the community who identified as a mental health consumer, carer or both. In Study 1, participants developed topics for mental health research in small group discussions, then voted on which topics, developed across all groups and sorted into thematic areas, were a priority. An online survey was developed from these research topics. Study 2 participants were asked to rate topics on a 5-point priority scale and rank the relative importance of the highest-rated topics.

Results

At the forum, 79 topics were generated and grouped into 14 thematic areas. Votes on priorities were spread across a large number of topics, with the greatest overall support for research relating to integrating care that is sensitive to past experiences of trauma into mental health service delivery (trauma-informed care). Survey responses were similarly spread, with the majority of research topics rated as important by at least 50% of participants and no clear individual priorities for research identified. Amongst items rated as important by approximately 80% of participants, key research areas included the delivery of services, and consumer and carer involvement.

Conclusions

Australian mental health consumers and carers demonstrate a strong understanding of the mental health system and its inadequacies. Although clear specific priorities are difficult to establish, consistent areas of focus are services and the role consumers and carers can play in their improvement. However, for consumer and carer views to be at the forefront of research, it is important to regularly update research agendas and work in partnership across the whole research process.

     

Health care consumer reports: an evaluation of consumer perspectives

There has been a proliferation of health care consumer reports, also known as "consumer guides," "report cards," and "performance reports," which are designed to assist consumers in making more informed health care decisions. While there is evidence that providers use such reports to identify and make changes in practice, thus improving the quality of care, there is little empirical evidence on how consumer guides/report cards are used by consumers. This study fills that gap by surveying 925 patients as they wait for ambulatory care in several clinics in a midwestern city. Findings indicate that consumers are selective in their use of these reports and quickly identify those sections of the report of most interest to them. Report developers should take precautions to ensure such reports are viewed as credible sources of health care information.     

The Dutch Consumer Quality Index: an example of stakeholder involvement in indicator development

Background

Like in several other Western countries, in the Dutch health care system regulated competition has been introduced. In order to make this work, comparable information is required about the performance of health care providers in terms of effectiveness, safety and patient experiences. Without further coordination, external actors will all try to force health care providers to be transparent. For health care providers this might result in a situation in which they have to deliver data for several sets of indicators, defined by different actors. Therefore, in the Netherlands an effort is made to define national sets of performance indicators and related measuring instruments. In this article, the following questions are addressed, using patient experiences as an example:- When and how are stakeholders involved in the development of indicators and instruments that measure the patients' experiences with health care providers?- Does this involvement lead to indicators and instruments that match stakeholders' information needs?

Discussion

The Dutch experiences show that it is possible to implement national indicator sets and to reach consensus about what needs to be measured. Preliminary evaluations show that for health care providers and health insurers the benefits of standardization outweigh the possible loss of tailor-made information. However, it has also become clear that particular attention should be given to the participation of patient/consumer organisations.

Summary

Stakeholder involvement is complex and time-consuming. However, it is the only way to balance the information needs of all the parties that ask for and benefit from transparency, without frustrating the health care system.