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1.  Internet Cancer Support Groups 
Cancer nursing  2005;28(1):1-7.
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,,,, and 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.
PMCID: PMC1409749  PMID: 15681976
Analysis; Cancer; Feminist; Internet; Support groups
2.  An Online Forum As a Qualitative Research Method: Practical Issues 
Nursing research  2006;55(4):267-273.
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.
PMCID: PMC2491331  PMID: 16849979
Issues; Online Forums; Cancer Patients; Qualitative Research
3.  Characteristics of Cancer Patients in Internet Cancer Support Groups 
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.
PMCID: PMC2504028  PMID: 18000430
Internet Cancer Support Groups; Cancer Patients; Sociodemographic Characteristics
4.  Challenges of Internet Recruitment: A Case Study with Disappointing Results 
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.
PMCID: PMC1550633  PMID: 15829478
Internet; data collection; World Wide Web; research subjects
5.  The Touro 12-Step: A Systematic Guide to Optimizing Survey Research with Online Discussion Boards 
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.
PMCID: PMC2956227  PMID: 20507843
Anabolic Steroids; Internet Research
6.  Internet-Based Computer Tailored Feedback on Sunscreen Use 
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
PMCID: PMC3376524  PMID: 22547528
Health communication, Computer tailoring; Web-based interventions, Internet
7.  Characteristics of Midlife Women Recruited Through Internet Communities/Groups 
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.
PMCID: PMC2494735  PMID: 18091620
Internet Communities; Midlife Women; Recruitment; Internet Research
8.  Recruitment of ethnic minorities into cancer clinical trials: experience from the front lines 
British Journal of Cancer  2012;107(7):1017-1021.
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.
PMCID: PMC3461149  PMID: 23011540
clinical trials; ethnic minorities; cancer clinical trials
9.  Using the Internet for Surveys and Health Research 
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.
PMCID: PMC1761932  PMID: 12554560
Clinical Trials; Confidentiality; Data Collection; Ethics, Research; Evaluation Studies; Informed Consent; Internet; Patient Selection; Qualitative Research; Research Design; Selection bias; Survey research; Research Subjects
10.  Patients’ attitudes to the summary care record and HealthSpace: qualitative study 
BMJ : British Medical Journal  2008;336(7656):1290-1295.
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.
PMCID: PMC2413413  PMID: 18511764
11.  Relationships among Internet health information use, patient behavior and self efficacy in newly diagnosed cancer patients who contact the National Cancer Institute's NCI Atlantic Region Cancer Information Service (CIS). 
This NCI funded study examined the relationship between the use of Internet health information by people newly diagnosed with cancer (N=500), with patient task behavior and perceived self efficacy. Study variables were compared among Direct users of Internet health information (people using the Internet themselves), Indirect users of Internet health information (people receiving Internet health information from friends or family members), and Non-users of Internet health information (people not using the Internet or receiving health information from the Internet). The subjects were recruited from persons who called the Atlantic Region of the NCI's Cancer Information Service (CIS), located at Fox Chase Cancer Center in Philadelphia, PA. Follow up phone interviews were done with participants six weeks after initial contact to assess impact of the use of the Internet on perceived patient task behavior and self efficacy. Results show significant relationships between Internet use and all study variables.
PMCID: PMC2244151  PMID: 12463827
12.  Collecting behavioural data using the world wide web: considerations for researchers 
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.
PMCID: PMC1732282  PMID: 12490652
13.  Participant Profiles According to Recruitment Source in a Large Web-Based Prospective Study: Experience From the Nutrinet-Santé Study 
Interest in Internet-based epidemiologic research is growing given the logistic and cost advantages. Cohort recruitment to maximally diversify the sociodemographic profiles of participants, however, remains a contentious issue.
The aim of the study was to characterize the sociodemographic profiles according to the recruitment mode of adult volunteers enrolled in a Web-based cohort.
The French NutriNet-Santé Web-based cohort was launched in 2009. Recruitment is ongoing and largely relies on recurrent multimedia campaigns. One month after enrollment, participants are asked how they learned about the study (eg, general newscast or a health program on television, radio newscast, newspaper articles, Internet, personal advice, leaflet/flyers) The sociodemographic profiles of participants recruited through operative communication channels (radio, print media, Internet, advice) were compared with the profiles of those informed through television by using polytomous logistic regression.
Among the 88,238 participants enrolled through the end of 2011, 30,401 (34.45%), 16,751 (18.98%), and 14,309 (16.22%) learned about the study from television, Internet, and radio newscasts, respectively. Sociodemographic profiles were various, with 14,541 (16.5%) aged ≥60 years, 20,166 (22.9%) aged <30 years, 27,766 (32.1%) without postsecondary education, 15,397 (19.7%) with household income <€1200/month, and 8258 (10.6%) with household income €3700/month. Compared to employed individuals, unemployed and retired participants were less likely to be informed about the study through other sources than through television (adjusted ORs 0.56-0.83, P<.001). Participants reporting up to secondary education were also less likely to have learned about the study through radio newscasts, newspaper articles, Internet, and advice than through television (adjusted ORs 0.60-0.77, P<.001).
Television broadcasts appear to permit the recruitment of e-cohort participants with diverse sociodemographic backgrounds, including socioeconomically disadvantaged individuals who are usually difficult to reach and retain in long-term epidemiologic studies. These findings could inform future Web-based studies regarding the development of promising targeted or general population recruitment strategies.
PMCID: PMC3785981  PMID: 24036068
cohort study; Internet; selection bias; population characteristics
14.  Creating a Framework for Online Cancer Services Research to Facilitate Timely and Interdisciplinary Applications 
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.
PMCID: PMC1550666  PMID: 15998625
Online information services; cancer communication; health outcomes; behavior change; cancer survivorship
15.  Evaluation of Influenza Prevention in the Workplace Using a Personally Controlled Health Record: Randomized Controlled Trial 
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.
Trial Registration NCT00142077
PMCID: PMC2483848  PMID: 18343794
Randomized controlled trial; personally controlled health record; Web-based; employee health program; influenza
16.  Internet trials: participant experiences and perspectives 
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.
PMCID: PMC3533967  PMID: 23092116
Internet; Randomized controlled trials; Participant experience; Methods; Methodology
17.  User-Centered Research on Breast Cancer Patient Needs and Preferences of an Internet-Based Clinical Trial Matching System 
Internet-based clinical trial matching systems have the potential to streamline the search process for women with breast cancer seeking alternative treatments. A prototype system was developed to leverage the capabilities of a personal health record system for the purpose of identifying clinical trials.
This study examines how breast cancer patients perceive and interact with a preliminary version of an Internet-based clinical trial matching system, while taking into account the demands of diagnosis and treatment decision making.
Breast cancer patients participated in small group discussions and interacted with the prototype website in a two-phase qualitative research process. The first phase explored the experience of breast cancer patients (n = 8) with treatment decision making, initial responses to the idea of Internet-based clinical trial matching systems, and reactions to the prototype site. In the second phase, a different set of breast cancer patients (n = 7) reviewed revised website content and presentation and participated in a usability test in which they registered on the system and completed a personal health record to set up the matching process.
Participants were initially skeptical of the prototype system because it emphasized registration, had a complicated registration process, and asked for complex medical information. Changing content and attending to usability guidelines improved the experience for women in the second phase of the research and enabled the identification of functionality and content issues, such as lack of clear information and directions on how to use the system.
This study showed that women felt favorably about the idea of using the Internet to search for clinical trials but that such a system needed to meet their expectations for credibility and privacy and be sensitive to their situation. Developers can meet these expectations by conforming to established usability guidelines and testing improvements with breast cancer patients. Future research is needed to verify these findings and to continue to improve systems of this nature.
PMCID: PMC1874719  PMID: 17513284
Software design; user-computer interface; breast neoplasms; personal health records; qualitative research; user-centered design; human-computer interaction
18.  The Establishment of an Ethical Guideline for Genetic Testing Through Citizen Consensus via the Internet in Taiwan 
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.
PMCID: PMC3056533  PMID: 20965872
Ethics; genetic testing; Internet; public participation; public engagement; participatory medicine
19.  Internet Interventions for Improving Psychological Well-Being in Psycho-Oncology: Review and Recommendations 
Psycho-oncology  2011;21(9):1016-1025.
Too few cancer patients and survivors receive evidence-based interventions for mental health symptoms. This review examines the potential for Internet interventions to help fill treatment gaps in psychosocial oncology and presents evidence regarding the likely utility of Internet interventions for cancer patients.
The authors examined available literature regarding Internet interventions tailored to cancer patients’ mental health needs, and reviewed elements of Internet interventions for mental health relevant to advancing psycho-oncology Internet intervention research. Recommendations for research methods for Internet interventions are described.
Relatively few rigorous studies focusing on mental health of cancer patients have been conducted online. A growing body of evidence supports the efficacy, accessibility, and acceptability of mental health Internet interventions for a variety of general and medical patient populations. The authors present recommendations and guidelines to assist researchers in developing, testing, and disseminating Internet interventions for cancer patients and survivors, to manage and improve their mental health. Issues unique to Internet interventions—including intervention structure, customization, provider interaction, and privacy and confidentiality issues—are discussed. These guidelines are offered as a step toward establishing a set of “best practices” for Internet interventions in psycho-oncology, and to generate further discussion regarding the goals of such interventions and their place in cancer care.
Internet interventions have the potential to fill an important gap in quality cancer care by augmenting limited available mental health services. These interventions should be developed in a manner consistent with best practices and must be empirically tested and validated.
PMCID: PMC3181007  PMID: 21608075
cancer; oncology; intervention studies; Internet; depression; anxiety; quality of life; research methods; Internet intervention
20.  Access, Interest, and Attitudes Toward Electronic Communication for Health Care Among Patients in the Medical Safety Net 
Electronic and internet-based tools for patient–provider communication are becoming the standard of care, but disparities exist in their adoption among patients. The reasons for these disparities are unclear, and few studies have looked at the potential communication technologies have to benefit vulnerable patient populations.
To characterize access to, interest in, and attitudes toward internet-based communication in an ethnically, economically, and linguistically diverse group of patients from a large urban safety net clinic network.
Observational, cross-sectional study
Adult patients (≥ 18 years) in six resource-limited community clinics in the San Francisco Department of Public Health (SFDPH)
Current email use, interest in communicating electronically with health care professionals, barriers to and facilitators of electronic health-related communication, and demographic data—all self-reported via survey.
Sixty percent of patients used email, 71 % were interested in using electronic communication with health care providers, and 19 % reported currently using email informally with these providers for health care. Those already using any email were more likely to express interest in using it for health matters. Most patients agreed electronic communication would improve clinic efficiency and overall communication with clinicians.
A significant majority of safety net patients currently use email, text messaging, and the internet, and they expressed an interest in using these tools for electronic communication with their medical providers. This interest is currently unmet within safety net clinics that do not offer a patient portal or secure messaging. Tools such as email encounters and electronic patient portals should be implemented and supported to a greater extent in resource-poor settings, but this will require tailoring these tools to patients’ language, literacy level, and experience with communication technology.
Electronic supplementary material
The online version of this article (doi:10.1007/s11606-012-2329-5) contains supplementary material, which is available to authorized users.
PMCID: PMC3682038  PMID: 23423453
health information technology; disparities; clinical communication; electronic patient portal
21.  On-line information and support for supporters and carers of haematological cancer patients: is access an issue? 
Supportive Care in Cancer  2012;20(11):2687-2695.
This study aimed to assess levels of internet access, likelihood of using various sources of information or support, and sociodemographic characteristics related to high internet access among support persons of haematological cancer patients.
A cross-sectional sample of haematological cancer survivors was recruited via a state cancer registry in Australia. Participating survivors invited their support persons to complete a survey. Of the 268 survivors, 68% had a support person return a survey. Approximately 80% of support persons reported having internet access.
Almost three quarters (74%) reported having ‘high’ access. Support persons reported their likelihood of using internet-based forms of information and support (59% and 26%, respectively) was lower than for other sources, including those delivered face-to-face (80% and 75%) or through print (87% and 70%). Participants who were older or had less education were less likely to report a high level of internet access or likelihood of using web-based sources.
The results demonstrate the need to continue to provide information and support via multiple modes. Support persons who potentially are more vulnerable due to age and lower education are the least likely to use internet-based options. Consequently, these groups may require alternatives, including face-to-face or print-based information and support.
PMCID: PMC3461210  PMID: 22350593
Haematological cancer; Support persons; Information; Support; Internet
22.  Internet Use Among Primary Care Patients with Type 2 Diabetes 
The Internet represents a promising tool to improve diabetes care.
To assess differences in demographics, self-care behaviors, and diabetes-related risk factor control by frequency of Internet use.
Design and Participants
We surveyed 909 patients with type 2 diabetes attending primary care clinics.
Frequency of Internet use, socioeconomic status, and responses to the Problem Areas in Diabetes (PAID), Summary of Diabetes Self-care Activities (SDSCA), and Health Utilities Index (HUI) scales. Survey responses were linked to last measured hemoglobin A1c, cholesterol, and blood pressure results. Comorbidities and current medications were obtained from the medical record.
Internet “never-users” (n=588, 66%) were significantly older (70.0±11.2 vs 59.0±11.3 years; P<.001) and less educated (26% vs 71% with>high school; P<.001) than Internet users (n=308, 34%). There were few significant differences in PAID or SDSCA scores or in diabetes metabolic control despite longer diabetes duration (10.3±8.2 vs 8.3±6.7 years; P<.001) and greater prevalence of coronary disease (40% vs 24%; P<.001) in nonusers. Less than 10% of current nonusers would use the Internet for secure health-related communication.
Older and less educated diabetes patients are less likely to use the Internet. Despite greater comorbidity, nonusers engaged in primary care had equal or better risk factor control compared to users.
PMCID: PMC1490127  PMID: 15963175
Internet use; diabetes; barriers to care; chronic disease
23.  “Shielded from the Real World”: Perspectives on Internet Cancer Support Groups by Asian Americans 
Cancer nursing  2010;33(3):E10-E20.
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.
PMCID: PMC2885150  PMID: 20357657
24.  Conducting Internet Research With the Transgender Population: Reaching Broad Samples and Collecting Valid Data 
Social science computer review  2011;30(2):202-211.
Health research on transgender people has been hampered by the challenges inherent in studying a hard-to-reach, relatively small, and geographically dispersed population. The Internet has the potential to facilitate access to transgender samples large enough to permit examination of the diversity and syndemic health disparities found among this population. In this article, we describe the experiences of a team of investigators using the Internet to study HIV risk behaviors of transgender people in the United States. We developed an online instrument, recruited participants exclusively via websites frequented by members of the target population, and collected data using online quantitative survey and qualitative synchronous and asynchronous interview methods. Our experiences indicate that the Internet environment presents the investigator with some unique challenges and that commonly expressed criticisms about Internet research (e.g., lack of generalizable samples, invalid study participants, and multiple participation by the same subject) can be overcome with careful method design, usability testing, and pilot testing. The importance of both usability and pilot testing are described with respect to participant engagement and retention and the quality of data obtained online.
PMCID: PMC3769415  PMID: 24031157
Internet research; validity; transgender; survey; interviews
25.  Comparing Administration of Questionnaires via the Internet to Pen-and-Paper in Patients with Heart Failure: Randomized Controlled Trial 
The use of the Internet to administer questionnaires has many potential advantages over the use of pen-and-paper administration. Yet it is important to validate Internet administration, as most questionnaires were initially developed and validated for pen-and-paper delivery. While some have been validated for use over the Internet, these questionnaires have predominately been used amongst the healthy general population. To date, information is lacking on the validity of questionnaires administered over the Internet in patients with chronic diseases such as heart failure.
To determine the validity of three heart failure questionnaires administered over the Internet compared to pen-and-paper administration in patients with heart failure.
We conducted a prospective randomized study using test-retest design comparing administration via the Internet to pen-and-paper administration for three heart failure questionnaires provided to patients recruited from a heart failure clinic in Toronto, Ontario, Canada: the Kansas City Cardiomyopathy Questionnaire (KCCQ), the Minnesota Living with Heart Failure Questionnaire (MLHFQ), and the Self-Care Heart Failure Index (SCHFI).
Of the 58 subjects enrolled, 34 completed all three questionnaires. The mean difference and confidence intervals for the summary scores of the KCCQ, MLHFQ, and SCHFI were 1.2 (CI -1.5 to 4.0, scale from 0 to 100), 4.0 (CI -1.98 to 10.04, scale from 0 to 105), and 10.1 (CI 1.18 to 19.07, scale from 66.7 to 300), respectively.
Internet administration of the KCCQ appears to be equivalent to pen-and-paper administration. For the MLHFQ and SCHFI, we were unable to demonstrate equivalence. Further research is necessary to determine if the administration methods are equivalent for these instruments.
PMCID: PMC2762767  PMID: 19275979
Heart failure; Internet; questionnaires; validation

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