Internet Cancer Support Groups (ICSGs) are an emerging form of support group on Internet specifically for cancer patients. Previous studies have indicated the effectiveness of ICSGs as a research setting or a data-collection method. Yet recent studies have also indicated that ICSGs tend to serve highly educated, high-income White males who tend to be at an early stage of cancer. In this article, a total of 317 general ICSGs and 229 ethnic-specific ICSGs searched through Google.com, Yahoo.com, http://Msn.com, AOL.com, and ACOR.org are analyzed from a feminist perspective. The written records of group discussions and written memos by the research staff members were also analyzed using content analysis. The idea categories that emerged about these groups include (a) authenticity issues; (b) ethnicity and gender issues; (c) intersubjectivity issues; and (d) potential ethical issues. The findings suggest that (a) researchers adopt multiple recruitment strategies through various Internet sites and/or real settings; (b) researchers raise their own awareness of the potential influences of the health-related resources provided by ICSGs and regularly update their knowledge related to the federal and state standards and/or policies related to ICSGs; and (c) researchers consider adopting a quota-sampling method.
Analysis; Cancer; Feminist; Internet; Support groups
Despite positive aspects of online forums as a qualitative research method, very little is known about practical issues involved in using online forums for data collection, especially for a qualitative research project.
The purpose of this paper is to describe the practical issues that the researchers encountered in implementing an online forum as a qualitative component of a larger study on cancer pain experience.
Throughout the study process, the research staff recorded issues ranged from minor technical problems to serious ethical dilemmas as they arose and wrote memos about them. The memos and written records of discussions were reviewed and analyzed using the content analysis suggested by Weber.
Two practical issues related to credibility were identified: a high response and retention rate and automatic transcripts. An issue related to dependability was the participants’ easy forgetfulness. The issues related to confirmability were difficulties in theoretical saturation and unstandardized computer and Internet jargon. A security issue related to hacking attempts was noted as well.
The analysis of these issues suggests several implications for future researchers who want to use online forums as a qualitative data collection method.
Issues; Online Forums; Cancer Patients; Qualitative Research
The Internet provides tremendous opportunities for innovative research, but few publications on the use of the Internet for recruiting study participants exist. This paper summarizes our experiences from 2 studies in which we attempted to recruit teenagers on the Internet for a questionnaire study to evaluate a smoking-cessation website.
To evaluate strategies of recruiting teenagers for the evaluation of a smoking-cessation website through the Internet.
In Study 1 (Defined Community Recruitment), we sent invitation emails to registered members of a youth health website, CyberIsle. A total of 3801 email addresses were randomly divided into 2 groups. In the first group, emails indicated that the first 30 respondents would receive a Can $20 electronic gift certificate for use at an online bookstore if they would go to the Smoking Zine website and respond to a short survey. For the second group, the email also indicated that respondents would receive an additional Can $10 gift certificate if they referred their friends to the study. Reminder emails were sent 10 days after the sending of the initial invitation email. In Study 2 (Open Recruitment), we posted invitation messages on Web discussion boards, Usenet forums, and one specialized recruitment website, and attempted a snowball recruiting strategy. When potential participants arrived at the study site, they were automatically randomized into either the higher incentives group (Can $15 electronic gift certificate) or lower incentive group (Can $5 gift certificate).
In Study 1 (defined community recruitment), 2109 emails were successfully delivered. Only 5 subjects (0.24%), including 1 referred by a friend, passed the recruitment process and completed the questionnaire; a further 6 individuals visited the information page of the study but did not complete the study. In Study 2 (open recruitment), the number of users seeing the advertisement is unknown. A total of 35 users arrived at the website, of whom 14 participants were recruited (8 from the Can $15 gift certificate group and 6 from the Can $5 gift certificate group). Another 5 were recruited from the general Internet community (3 from discussion boards and 2 from the Research Volunteers website). The remaining 9 participants were recruited through friend referrals with the snowball strategy.
Overall, the recruitment rate was disappointingly low. In our case, recruitment using Internet technologies including email, electronic discussion boards, Usenet forums, and websites did not prove to be an effective approach for soliciting young subjects to participate in our research. Possible reasons are discussed, including the participants' perspective. A major challenge is to differentiate trustable and legitimate messages from spam and fraudulent misinformation on the Internet. From the researchers' perspective, approaches are needed to engage larger samples, to verify participants' attributes, and to evaluate and adjust for potential biases associated with Internet recruitment.
Internet; data collection; World Wide Web; research subjects
The Internet, in particular discussion boards, can provide a unique opportunity for recruiting participants in online research surveys. Despite its outreach potential, there are significant barriers which can limit its success. Trust, participation, and visibility issues can all hinder the recruitment process; the Touro 12-Step was developed to address these potential hurdles. By following this step-by-step approach, researchers will be able to minimize these pitfalls and maximize their recruitment potential via online discussion boards.
Anabolic Steroids; Internet Research
The purpose of this study was to describe characteristics of cancer patients who were attending Internet Cancer Support Groups (ICSGs) and to provide direction for future research. A total of 204 cancer patients were recruited through ICSGs by posting the study announcement on the websites of the ICSGs. The participants were asked to fill out Internet survey questionnaires on sociodemographic characteristics and health/disease status. The data were analyzed using descriptive and inferential statistics including t-tests, ANOVA, and chi-square tests. Findings indicate that cancer patients recruited through the ICSGs tended to be middle-aged, well-educated, female and middle class. The findings also indicate that there were significant differences in some characteristics according to gender and ethnicity. Based on the findings, some implications are suggested for future research using and developing the ICSGs.
Internet Cancer Support Groups; Cancer Patients; Sociodemographic Characteristics
The purpose of this study was to explore demographic characteristics of a specific online population, midlife women recruited through Internet communities (ICs) or groups, and to provide future direction for Internet research among midlife women. Using a feminist perspective, the study focused on ethnic variations in the characteristics of the midlife women. A total of 192 midlife women were recruited through ICs. The Internet survey included questions on sociodemographic characteristics and health/illness status. The data were analyzed using descriptive and inferential statistics. The findings indicated that midlife women recruited through ICs tended to be Caucasian, young, married, and affluent. The findings also indicated significant ethnic differences in sociodemographic characteristics. The findings suggest that researchers need to consider that midlife women recruited from ICs tend to be a specific group of midlife women.
Internet Communities; Midlife Women; Recruitment; Internet Research
Objective: To identify and describe advantages, challenges, and ethical considerations of web based behavioural data collection.
Methods: This discussion is based on the authors' experiences in survey development and study design, respondent recruitment, and internet research, and on the experiences of others as found in the literature.
Results: The advantages of using the world wide web to collect behavioural data include rapid access to numerous potential respondents and previously hidden populations, respondent openness and full participation, opportunities for student research, and reduced research costs. Challenges identified include issues related to sampling and sample representativeness, competition for the attention of respondents, and potential limitations resulting from the much cited "digital divide", literacy, and disability. Ethical considerations include anonymity and privacy, providing and substantiating informed consent, and potential risks of malfeasance.
Conclusions: Computer mediated communications, including electronic mail, the world wide web, and interactive programs will play an ever increasing part in the future of behavioural science research. Justifiable concerns regarding the use of the world wide web in research exist, but as access to, and use of, the internet becomes more widely and representatively distributed globally, the world wide web will become more applicable. In fact, the world wide web may be the only research tool able to reach some previously hidden population subgroups. Furthermore, many of the criticisms of online data collection are common to other survey research methodologies.
Skin cancer incidence rates signify the need for effective programs for the prevention of skin cancer and for helping skin cancer patients. Internet and computer tailored (CT) technology fosters the development of highly individualized health communication messages. Yet, reactions to Internet CT programs may differ per level of involvement and education level and remain understudied.
First, we identified perceptions concerning sunscreen use in Dutch adults and assessed differences in differences between the general public and skin cancer patients, and between low and high educated respondents. Second, we assessed program evaluations of these groups about a new Dutch CT Internet-based program promoting sunscreen use, and potential differences between groups
A cross-sectional research design was used. In total, 387 respondents participated and filled out an online questionnaire based on the I-Change Model assessing socio-demographics, history of skin cancer, sunscreen use, and beliefs about sunscreen use. The responses were fed into a computer program that generated personal tailored feedback on screen; next we assessed their program evaluations
Of the 132 patients, 92 were female (69.7%) and 40 were male (30.3%). In the general population (N = 225), 139 (54.5%) respondents were female and 116 (45.5%) were male. Men (50.9 years) were 8 years older than women (43.1 years). Most patients were diagnosed with basal cell carcinoma (N = 65; 49.2%), followed by melanoma (N = 28; 21.2%) and squamous cell carcinoma (N = 10; 7.6%); 22% (N = 29) did not remember their skin cancer type. Patients had higher knowledge levels, felt significantly more at risk, were more convinced of the pros of sunscreen, experienced more social support to use sunscreen, had higher self-efficacy, and made more plans to use sunscreen than respondents without skin cancer (N=255; all P’s< .01). Low (N=196) educated respondents scored lower on knowledge (P<.003) but made more action plans (P<.03) than higher educated respondents (N=191). The CT feedback was evaluated positively by all respondents, and scored a 7.8 on a 10 point scale. Yet, patients evaluated the CT program slightly more (P<.05) positive (8.1) than non-patients. (7.6). Lower educated respondents were significantly (P<.05) more positive about the advantages of the program.
First, involvement with skin cancer was reflected in more positive beliefs toward sunscreen use in patients in comparison with non-patients. Second, the CT Internet program was well accepted by both patients and non-patients, and low and high educated respondents, perhaps because higher educated respondents were more knowledgeable about sunscreen use and skin cancer. Third, a pro-active approach as conducted in our study is very well suited to reach various groups of people and is more likely to be successful than a reactive approach
Health communication, Computer tailoring; Web-based interventions, Internet
Despite positive reports about Internet cancer support groups (ICSGs), ethnic minorities, including Asian Americans, have been reported to be less likely to use ICSGs. Unique cultural values, beliefs, and attitudes have been considered reasons for the low usage rate of ICSGs among Asian Americans. However, studies have rarely looked at this issue.
The purpose of this study was to explore (a) how Asian Americans living with cancer who participated in ICSGs viewed ICSGs, (b) what facilitated or inhibited their participation in ICSGs, and (c) what cultural values and beliefs influenced their participation in ICSGs.
The study was a one-month qualitative online forum among 18 Asian American cancer patients recruited through a convenience sampling method. Nine topics on the use of ICSGs organized the forum discussion, and the data were analyzed using thematic analysis.
Four themes emerged from the data analysis process: (a) “more than just my family,” (b) “part of my family,” (c) “anonymous me,” and (d) “shielded from the real world.”
The overarching theme was Asian Americans’ marginalized experience in the use of Internet cancer support groups.
Implications for Practice
Offering the most current information on cancer and cancer treatment is essential for nursing practice in developing a culturally competent ICSG for Asian Americans. Also, emotional familiarity should be incorporated into the design of the ICSG, and the ICSG needs to be based on non-judgmental and non-discriminative interactions.
Researchers from a wide array of disciplines have conducted engaging and informative studies in recent years concerning the use of the Internet for cancer-related services. Typically, these publications provide key data related to utilization statistics, how online information can be used, what users want or expect from the Internet, outcomes or impacts, and quality and credibility of websites. These are important themes for understanding online cancer issues. However, this special issue of the Journal of Medical Internet Research seeks to recast these themes in a way that will facilitate pragmatic and applied means of employing data in prescriptive and interdisciplinary ways. This issue includes 14 papers that exemplify applications for the research framework recommended in this paper. This framework includes an expanded focus on the development and design of online cancer services, online consumer behavior/communication, behavior change, and living with cancer.
Online information services; cancer communication; health outcomes; behavior change; cancer survivorship
Personally controlled health records (PCHRs) are accessible over the Internet and allow individuals to maintain and manage a secure copy of their medical data. These records provide a new opportunity to provide customized health recommendations to individuals based on their record content. Health promotion programs using PCHRs can potentially be used in a variety of settings and target a large range of health issues.
The aim was to assess the value of a PCHR in an employee health promotion program for improving knowledge, beliefs, and behavior around influenza prevention.
We evaluated a PCHR-based employee health promotion program using a randomized controlled trial design. Employees at Hewlett Packard work sites who reported reliable Internet access and email use at least once every 2 days were recruited for participation. PCHRs were provided to all participants for survey administration, and tailored, targeted health messages on influenza illness and prevention were delivered to participants in the intervention group. Participants in the control group received messages addressing cardiovascular health and sun protection. The main outcome measure was improvement in knowledge, beliefs, and behavior around influenza prevention. Secondary outcomes were influenza vaccine rates among household members, the impact of cardiovascular health and sun protection messages on the control group, and the usability and utility of the PCHR-based program for employees.
The intervention did not have a statistically significant effect on the influenza knowledge elements we assessed but did impact certain beliefs surrounding influenza. Participants in the intervention group were more likely to believe that the influenza vaccine was effective (OR = 5.6; 95% CI = 1.7-18.5), that there were actions they could take to prevent the flu (OR = 3.2; 95% CI = 1.1-9.2), and that the influenza vaccine was unlikely to cause a severe reaction (OR = 4.4; 95% CI = 1.3-15.3). Immunization rates did not differ between the intervention and control groups. However, participants in the intervention group were more likely to stay home during an infectious respiratory illness compared with participants in the control group (39% [16/41] vs 14% [5/35], respectively; P = .02). The program also succeeded in improving recognition of the signs of heart attack and stroke among participants in the control group. Overall, 78% of participants rated the PCHR as “extremely/very” easy to use, and 73% responded that they would be “extremely/very” likely to participate again in a PCHR-based health promotion system such as this one.
With a small sample size, this study identified a modest impact of a PCHR-based employee health program on influenza prevention and control. Employees found the PCHR acceptable and easy to use, suggesting that it should be explored as a common medium for health promotion in the workplace.
Randomized controlled trial; personally controlled health record; Web-based; employee health program; influenza
Use of the Internet to conduct randomised controlled trials is increasing, and provides potential to increase equity of access to medical research, increase the generalisability of trial results and decrease the costs involved in conducting large scale trials. Several studies have compared response rates, completeness of data, and reliability of surveys using the Internet and traditional methods, but very little is known about participants’ attitudes towards Internet-based randomised trials or their experience of participating in an Internet-based trial.
To obtain insights into the experiences and perspectives of participants in an Internet-based randomised controlled trial, their attitudes to the use of the Internet to conduct medical research, and their intentions regarding future participation in Internet research.
All English speaking participants in a recently completed Internet randomised controlled trial were invited to participate in an online survey.
1246 invitations were emailed. 416 participants completed the survey between May and October 2009 (33% response rate). Reasons given for participating in the Internet RCT fell into 4 main areas: personal interest in the research question and outcome, ease of participation, an appreciation of the importance of research and altruistic reasons. Participants’ comments and reflections on their experience of participating in a fully online trial were positive and less than half of participants would have participated in the trial had it been conducted using other means of data collection. However participants identified trade-offs between the benefits and downsides of participating in Internet-based trials. The main trade-off was between flexibility and convenience – a perceived benefit – and a lack connectedness and understanding – a perceived disadvantage. The other tradeoffs were in the areas of: ease or difficulty in use of the Internet; security, privacy and confidentiality issues; perceived benefits and disadvantages for researchers; technical aspects of using the Internet; and the impact of Internet data collection on information quality. Overall, more advantages were noted by participants, consistent with their preference for this mode of research over others. The majority of participants (69%) would prefer to participate in Internet-based research compared to other modes of data collection in the future.
Participants in our survey would prefer to participate in Internet-based trials in the future compared to other ways of conducting trials. From the participants’ perspective, participating in Internet-based trials involves trade-offs. The central trade-off is between flexibility and convenience – a perceived benefit – and lack of connectedness and understanding – a perceived disadvantage. Strategies to maintain the convenience of the Internet while increasing opportunities for participants to feel supported, well-informed and well-understood would seem likely to increase the acceptability of Internet-based trials.
Internet; Randomized controlled trials; Participant experience; Methods; Methodology
With the rapid advance of genetics, the application of genetic testing has become increasingly popular. Test results have had a tremendous impact on individuals who receive the test and his or her family. The ethical, legal, and social implications (ELSI) of genetic testing cannot be overlooked. The Internet is a potential tool for public engagement.
This study aimed at establishing ethical guidelines for genetic testing in Taiwan through a participatory citizen consensus approach via the Internet.
The research method used was a citizen consensus conference modified by an Internet application and the Delphi technique. The citizen consensus conference is one of the public participation mechanisms. The draft ethical guidelines for genetic testing were written by an expert panel of 10. The Delphi technique was applied to a citizen panel recruited via the Internet until a consensus was reached. Our research population was restricted to people who had Internet access.
Included in the citizen panel were 100 individuals. A total of 3 individuals dropped out of the process. The citizen panel was exposed to the issues through Internet learning and sharing. In all, 3 rounds of anonymous questionnaires were administered before a consensus was reached in terms of importance and feasibility. The result was ethical guidelines composed of 4 categories and 25 items. The 4 categories encompassed decision making (6 items), management of tissue samples (5 items), release of results (8 items), and information flow (6 items). On a scale of 1 to 10, the average (SD) importance score for the decision-making category was 9.41 (SD 0.58); for the management of tissue samples category, the average score was 9.62 (SD 0.49); for the release of results category, the average score was 9.34 (SD= 0.59); and for the information flow category, the average score was 9.6 (SD = 0.43). Exploratory analyses indicated that participants with higher education tended to attribute more importance to these guidelines.
The resulting recommended ethical guidelines had 4 categories and 25 items. We hope through the implementation of these guidelines that mutual trust can be established between health care profession and the general public with respect to genetic tests.
Ethics; genetic testing; Internet; public participation; public engagement; participatory medicine
Throughout the world there are problems recruiting ethnic minority patients into cancer clinical trials. A major barrier to trial entry may be distrust of research and the medical system. This may be compounded by the regulatory framework governing research with an emphasis on written consent, closed questions and consent documentation, as well as fiscal issues. The Leicester UK experience is that trial accrual is better if British South Asian patients are approached by a senior doctor rather than someone of perceived lesser hierarchical status and a greater partnership between the hospital and General Practitioner may increase trial participation of this particular ethnic minority. In Los Angeles, USA, trial recruitment was improved by a greater utilisation of Hispanic staff and a Spanish language-based education programme. Involvement of community leaders is essential. While adhering to national, legal and ethnical standards, information sheets and consent, it helps if forms can be tailored towards the local ethnic minority population. Written translations are often of limited value in the recruitment of patients with no or limited knowledge of English. In some cultural settings, tape-recorded verbal consent (following approval presentations) may be an acceptable substitute for written consent, and appropriate legislative changes should be considered to facilitate this option. Approaches should be tailored to specific minority populations, taking consideration of their unique characteristics and with input from their community leadership.
clinical trials; ethnic minorities; cancer clinical trials
Objective To document the views of patients and the public towards the summary care record (SCR, a centrally stored medical record drawn from the general practice record) and HealthSpace (a personal health organiser accessible through the internet from which people can view their SCR), with a particular focus on those with low health literacy, potentially stigmatising conditions, or difficulties accessing health care.
Design 103 semistructured individual interviews and seven focus groups.
Setting Three early adopter primary care trusts in England where the SCR and HealthSpace are being piloted. All were in areas of relative socioeconomic deprivation.
Participants Individual participants were recruited from general practice surgeries, walk-in centres, out of hours centres, and accident and emergency departments. Participants in focus groups were recruited through voluntary sector organisations; they comprised advocates of vulnerable groups and advocates of people who speak limited English; people with HIV; users of mental health services; young adults; elderly people; and participants of a drug rehabilitation programme.
Methods Participants were asked if they had received information about the SCR and HealthSpace and about their views on shared electronic records in different circumstances.
Results Most people were not aware of the SCR or HealthSpace and did not recall receiving information about it. They saw both benefits and drawbacks to having an SCR and described a process of weighing the former against the latter when making their personal choice. Key factors influencing this choice included the nature of any illness (especially whether it was likely to lead to emergency care needs); past and present experience of healthcare and government surveillance; the person’s level of engagement and health literacy; and their trust and confidence in the primary healthcare team and the wider NHS. Overall, people with stigmatising illness were more positive about the SCR than people who claimed to speak for “vulnerable groups.” Misconceptions about the SCR were common, especially confusion about what data it contained and who would have access to it. Most people were not interested in recording their medical data or accessing their SCR via HealthSpace, but some saw the potential for this new technology to support self management and lay care for those with chronic illness.
Conclusion Despite an extensive information programme in early adopter sites, the public remains unclear about current policy on shared electronic records, though most people view these as a positive development. The “implied consent” model for creating and accessing a person’s SCR should be revisited, perhaps in favour of “consent to view” at the point of access.
The enormous growth of the Internet and the World Wide Web has made these two technologies an important potential adjunct to cost-effective health care research and delivery. This article surveys some recent developments in telecommunications, networking and artificial intelligence that are likely to have a significant impact on improving the efficiency and quality of future health care. Issues discussed include: clinical record keeping on the Internet, Internet-assisted medical diagnosis, privacy and security matters, financial transactions, digital money, bandwidth concerns, multimedia (music, audio and video) information delivery via the Internet, intellectual property, and the concept of Information Philanthropy.
This paper concerns the use of the Internet in the research process, from identifying research issues through qualitative research, through using the Web for surveys and clinical trials, to pre-publishing and publishing research results. Material published on the Internet may be a valuable resource for researchers desiring to understand people and the social and cultural contexts within which they live outside of experimental settings, with due emphasis on the interpretations, experiences, and views of `real world' people. Reviews of information posted by consumers on the Internet may help to identify health beliefs, common topics, motives, information, and emotional needs of patients, and point to areas where research is needed. The Internet can further be used for survey research. Internet-based surveys may be conducted by means of interactive interviews or by questionnaires designed for self-completion. Electronic one-to-one interviews can be conducted via e-mail or using chat rooms. Questionnaires can be administered by e-mail (e.g. using mailing lists), by posting to newsgroups, and on the Web using fill-in forms. In "open" web-based surveys, selection bias occurs due to the non-representative nature of the Internet population, and (more importantly) through self-selection of participants, i.e. the non-representative nature of respondents, also called the `volunteer effect'. A synopsis of important techniques and tips for implementing Web-based surveys is given. Ethical issues involved in any type of online research are discussed. Internet addresses for finding methods and protocols are provided. The Web is also being used to assist in the identification and conduction of clinical trials. For example, the web can be used by researchers doing a systematic review who are looking for unpublished trials. Finally, the web is used for two distinct types of electronic publication. Type 1 publication is unrefereed publication of protocols or work in progress (a `post-publication' peer review process may take place), whereas Type 2 publication is peer-reviewed and will ordinarily take place in online journals.
Clinical Trials; Confidentiality; Data Collection; Ethics, Research; Evaluation Studies; Informed Consent; Internet; Patient Selection; Qualitative Research; Research Design; Selection bias; Survey research; Research Subjects
The influenza pandemic of 2009 revealed shortcomings in the existing guidelines for risk and outbreak communication. Concepts such as building trust proved hard to achieve in practice, whereas other issues such as communicating through the internet and coping with the political fallout of disease outbreaks are not dealt with in existing guidelines. This article surveys the current guidelines and makes recommendations for additional tools and guidelines to be developed in four areas: integrating long-term behavior change models with outbreak communications; research to develop a better understanding of communicating through the internet; research to understand how to use communications to build trust; and developing guidelines and principles to understand the political nature of disease outbreaks.
pandemic; pandemic risk communication; outbreak communication; health communication
Previous health research has often explicitly excluded individuals from minority ethnic backgrounds due to perceived cultural and communication difficulties, including studies where there might be language/literacy problems in obtaining informed consent. This study addressed these difficulties by developing audio-recorded methods of obtaining informed consent and recording data. This report outlines 1) our experiences with securing recruitment to a qualitative study investigating alternative methods of data collection, and 2) the development of a standardised process for obtaining informed consent from individuals from minority ethnic backgrounds whose main language does not have an agreed written form.
Two researchers from South Asian backgrounds recruited adults with Type 2 diabetes whose main language was spoken and not written, to attend a series of focus groups. A screening tool was used at recruitment in order to assess literacy skills in potential participants. Informed consent was obtained using audio-recordings of the patient information and recording patients' verbal consent. Participants' perceptions of this method of obtaining consent were recorded.
Recruitment rates were improved by using telephone compared to face-to-face methods. The screening tool was found to be acceptable by all potential participants. Audio-recorded methods of obtaining informed consent were easy to implement and accepted by all participants. Attrition rates differed according to ethnic group. Snowballing techniques only partly improved participation rates.
Audio-recorded methods of obtaining informed consent are an acceptable alternative to written consent in study populations where literacy skills are variable. Further exploration of issues relating to attrition is required, and a range of methods may be necessary in order to maximise response and participation rates.
Internet interventions have a large potential for public health impact, and their efficacy has been established over the past 10–15 years. Cost effectiveness of Internet interventions is one of the most frequently cited reasons for developing such treatments.
This paper provides a review of economic evaluations of Internet interventions with specific recommendations for future economic analyses of Internet interventions.
A review of PubMed from 1995 through 2008 was conducted.
We identified eight studies that reported specific economic indicators associated with an Internet intervention, though many were lacking comprehensive analyses. Issues related to analysis perspective, included costs, type of analysis performed, and appropriate outcomes for Internet interventions are explored.
The lack of cost data published to date is likely a reflection of the early stage of research for many papers published during the review period. As the field now moves to effectiveness studies, it is important for cost-effectiveness data to be collected.
Internet interventions; Public health impact; Economic evaluations
Early detection of symptoms arising from exposure to pathogens, harmful substances, or environmental changes is required for timely intervention. The administration of Web-based questionnaires is a potential method for collecting information from a sample population.
The objective of our study was to develop a Web-based daily questionnaire for health (WDQH) for symptomatic surveillance.
We adopted two different survey methods to develop the WDQH: an Internet panel survey, which included participants already registered with an Internet survey company, and the Tokyo Consumers’ Co-operative Union (TCCU) Internet survey, in cooperation with the Japanese Consumers’ Co-operative Union, which recruited participants by website advertising. The Internet panel survey participants were given a fee every day for providing answers, and the survey was repeated twice with modified surveys and collection methods: Internet Panel Survey I was conducted every day, and Internet Panel Survey II was conducted every 3 days to reduce costs. We examined whether the survey remained valid by reporting health conditions on day 1 over a 3-day period, and whether the response rate would vary among groups with different incentives. In the TCCU survey, participants were given a fee only for initially registering, and health information was provided in return for survey completion. The WDQH included the demographic details of participants and prompted them to answer questions about the presence of various symptoms by email. Health information collected by the WDQH was then used for the syndromic surveillance of infection.
Response rates averaged 47.3% for Internet Panel Survey I, 42.7% for Internet Panel Survey II, and 40.1% for the TCCU survey. During a seasonal influenza epidemic, the WDQH detected a rapid increase in the number of participants with fever through the early aberration reporting system.
We developed a health observation method based on self-reporting by participants via the Internet. We validated the usefulness of the WDQH by its practical use in syndromic surveillance.
Web-based survey; syndromic surveillance; long-term operation
Unlike many patients of the past, today's health-care users want to become more informed about their illnesses, and they want the most current information. The Internet has become a popular way to access current information, and since its introduction more people are turning to it to find medical information. Studies report that anywhere from 36% to 55% of the American population that use the Internet is using the Internet to research medical information, and these percentages have been rising. Cancer is 1 of the top 2 diseases about which people seek information on the Internet. Some studies have specifically asked whether breast cancer patients access the Internet for medical information; estimates range from 10% to 43% of breast cancer patients who use the Internet, with higher usage being associated with more education, greater income, and younger age.
To identify where breast cancer patients find medical information about their illness and to track changes over time, from active treatment to survivorship status.
Participants were 224 women who had been recently diagnosed with Stage I, Stage II, or Stage III breast cancer. Each woman was contacted approximately 8 months and 16 months after diagnosis and was asked about 10 different information sources they could have used to obtain information or support about their breast cancer.
Eight months after diagnosis, the top 3 information sources used by women were books (64%), the Internet (49%), and videos (41%). However, at follow-up (16 months after diagnosis), the most frequently cited information source was the Internet (40%), followed by books (33%), and the American Cancer Society (17%). We found that women continued to use the Internet as a means of gathering information even after their treatment ended. Significant unique predictors of Internet use were more years of formal education and younger ages. Cancer stage was not a significant predictor of Internet use.
Previous research has been mixed about the percentage of cancer patients who use the Internet to gather information about their illnesses. The results of the present study corroborate 2 other data sets of breast cancer patients, as just over 44% of the women reported using the Internet after diagnosis. Sixteen months after diagnosis, the percentage of women using the Internet dropped slightly, but other chief sources dropped sharply at that time. The Internet continues to play an important role for cancer survivors after medical treatment has ended, and health professionals can use this knowledge to provide their patients with Internet advice.
Breast cancer; Internet; Internet use; Internet search
The Large Scale Vocabulary Test, sponsored by the National Library of Medicine (NLM) and the Agency for Health Care Policy and Research (AHCPR), was conducted to determine the extent to which a combination of existing health-related terminologies cover vocabulary needed in health care information systems. The test was conducted over the Internet using a sophisticated World Wide Web interface with over 60 participants and over 40,000 terms submitted. This paper discusses the issues encountered in the design and execution of the experiment, including the design of the interface and the issues of recruitment, training, and guidance of remote participants over the Internet. Test data are currently undergoing expert review. Upon completion of the expert review, the results of the test will be fully reported.
Most researchers who are conducting physical activity trials face difficulties in recruiting participants who are representative of the population or from specific population groups. Participants who are often the hardest to recruit are often those who stand to benefit most (the least active, from ethnic and other minority groups, from neighbourhoods with high levels of deprivation, or have poor health). The aim of our study was to conduct a systematic review of published literature of walking interventions, in order to identify the impact, characteristics, and differential effects of recruitment strategies among particular population groups.
We conducted standard searches for studies from four sources, (i) electronic literature databases and websites, (ii) grey literature from internet sources, (iii) contact with experts to identify additional "grey" and other literature, and (iv) snowballing from reference lists of retrieved articles. Included studies were randomised controlled trials, controlled before-and-after experimental or observational qualitative studies, examining the effects of an intervention to encourage people to walk independently or in a group setting, and detailing methods of recruitment.
Forty seven studies met the inclusion criteria. The overall quality of the descriptions of recruitment in the studies was poor with little detail reported on who undertook recruitment, or how long was spent planning/preparing and implementing the recruitment phase. Recruitment was conducted at locations that either matched where the intervention was delivered, or where the potential participants were asked to attend for the screening and signing up process. We identified a lack of conceptual clarity about the recruitment process and no standard metric to evaluate the effectiveness of recruitment.
Recruitment concepts, methods, and reporting in walking intervention trials are poorly developed, adding to other limitations in the literature, such as limited generalisability. The lack of understanding of optimal and equitable recruitment strategies evident from this review limits the impact of interventions to promote walking to particular social groups. To improve the delivery of walking interventions to groups which can benefit most, specific attention to developing and evaluating targeted recruitment approaches is recommended.
Recruitment; walking; physical activity; health promotion
Epidemiological research often requires collection of data from a representative sample of the community or recruitment of specific groups through broad community approaches. The population coverage of traditional survey methods such as mail-outs to residential addresses, and telephone contact via public directories or random-digit-dialing is declining and survey response rates are falling. There is a need to explore new sampling frames and consider multiple response modes including those offered by changes in telecommunications and internet technology.
We evaluated response rates and cost-effectiveness for three modes of survey administration (postal invitation/postal survey, postal invitation/internet survey and postal invitation/telephone survey) and two styles of contact approach (personalised and generic) in a community survey of greywater use. Potential respondents were contacted only once, with no follow up of non-responders.
The telephone survey produced the highest adjusted response rate (30.2%), followed by the personalised postal survey (10.5%), generic postal survey (7.5%) and then the internet survey (4.7% for the personalised approach and 2.2% for the generic approach). There were some differences in household characteristics and greywater use rates between respondents to different survey modes, and between respondents to personalised and generic approaches. These may be attributable to the differing levels of motivations needed for a response, and varying levels of interest in the survey topic among greywater users and non-users. The generic postal survey had the lowest costs per valid survey received (Australian $22.93), followed by the personalised postal survey ($24.75).
Our findings suggest that postal surveys currently remain the most economic option for population-based studies, with similar costs for personalised and generic approaches. Internet surveys may be effective for specialised groups where email lists are available for initial contact, but barriers other than household internet access still exist for community-based surveys. Given the increasing recruitment challenges facing community-based studies, there is an imperative to gather contemporary comparative data on different survey modes and recruitment approaches in order to determine their strengths, limitations and costs. Researchers also need to document and report on the potential biases in the target and respondent populations and how this may affect the data collected.
Survey methods; Postal survey; Telephone survey; Internet survey; Cost-effectiveness