Adopting Quality Criteria for Websites Providing Medical Information About Rare Diseases

Pauer, Frédéric; Göbel, Jens; Storf, Holger; Litzkendorf, Svenja; Babac, Ana; Frank, Martin; Lührs, Verena; Schauer, Franziska; Schmidtke, Jörg; Biehl, Lisa; Ückert, Frank; Schulenburg, Johann-Matthias Graf von der; Hartz, Tobias

doi:10.2196/ijmr.5822

Cited by 17 publications

(12 citation statements)

References 10 publications

(13 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…A detailed description of the framework of this study can be found in the literature [ 19 ]. In brief, the aim of the project is to conceptualize and implement a central information portal about rare diseases in Germany, which refers to existing quality-assured information sources [ 20 ].…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Rare Diseases on the Internet: An Assessment of the Quality of Online Information

et al. 2017

Self Cite

View full text Add to dashboard Cite

BackgroundThe importance of the Internet as a medium for publishing and sharing health and medical information has increased considerably during the last decade. Nonetheless, comprehensive knowledge and information are scarce and difficult to find, especially for rare diseases. Additionally, the quality of health or medical information about rare diseases is frequently difficult to assess for the patients and their family members.ObjectiveThe aim of this study is to assess the quality of information on the Internet about rare diseases. Additionally, the study aims to evaluate if the quality of information on rare diseases varies between different information supplier categories.MethodsA total of 13 quality criteria for websites providing medical information about rare diseases were transferred to a self-disclosure questionnaire. Identified providers of information on the Internet about rare diseases were invited to fill out the questionnaire. The questionnaire contained questions about the information provider in general (eg, supplier category, information category, language, use of quality certificates, and target group) and about quality aspects that reflect the 13 quality criteria. Differences in subgroup analyses were performed using t tests.ResultsWe identified 693 websites containing information about rare diseases. A total of 123 questionnaires (17.7%) were completely filled out by the information suppliers. For the remaining identified suppliers (570/693, 82.3%), the questionnaires were filled out by the authors based on the information available on their website. In many cases, the quality of websites was proportionally low. Furthermore, subgroup analysis showed no statistically significant differences between the quality of information provided by support group/patient organization compared to medical institution (P=.19). The quality of information by individuals (patient/relative) was significantly lower compared to information provided by support group/patient organization (P=.001), medical institution (P=.009), and other associations and sponsoring bodies (P=.001) as well.ConclusionsOverall, the quality of information on the Internet about rare diseases is low. Quality certificates are rarely used and important quality criteria are often not fulfilled completely. Additionally, some information categories are underrepresented (eg, information about psychosocial counseling, social-legal advice, and family planning). Nevertheless, due to the high amount of information provided by support groups, this study shows that these are extremely valuable sources of information for patients suffering from a rare disease and their relatives.

show abstract

Section: Introductionmentioning

confidence: 99%

“…Additionally, the study aims to evaluate if information about rare diseases (eg, information provided by support groups) is as reliable as information provided by medical institutions by performing subgroup analyses. The assessment is based on 13 quality criteria for websites providing medical information about rare diseases [ 19 ].…”

Section: Introductionmentioning

confidence: 99%

Rare Diseases on the Internet: An Assessment of the Quality of Online Information

et al. 2017

Self Cite

View full text Add to dashboard Cite

show abstract

“…Users can actively request those, but we have to confirm that these websites do not meet the essential quality criteria. We published a detailed description relating to the adoption of quality criteria for websites providing medical information on rare diseases elsewhere [ 21 ].…”

Section: Resultsmentioning

confidence: 99%

Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study

Litzkendorf¹,

Hartz²,

Göbel³

et al. 2018

JMIR Res Protoc

Self Cite

View full text Add to dashboard Cite

BackgroundRecently, public and political interest has focused on people living with rare diseases and their health concerns. Due to the large number of different types of rare diseases and the sizable number of patients, taking action to improve the life of those affected is gaining importance. In 2013, the federal government of Germany adopted a national action plan for rare diseases, including the call to establish a central information portal on rare diseases (Zentrales Informationsportal über seltene Erkrankungen, ZIPSE).ObjectiveThe objective of this study, therefore, was to conduct scientific research on how such a portal must be designed to meet the needs of patients, their families, and medical professionals, and to provide high-quality information for information seekers.MethodsWe chose a 3-step procedure to develop a needs-based prototype of a central information portal. In the first step, we determined the information needs of patients with rare diseases, their relatives, and health care professionals by means of qualitative interviews and their content-analytical evaluation. On the basis of this, we developed the basic structure of the portal. In the second step, we identified quality criteria for websites on rare diseases to ensure that the information linked with ZIPSE meets the quality demands. Therefore, we gathered existing criteria catalogs and discussed them in an expert workshop. In the third step, we implemented and tested the developed prototypical information portal.ResultsA portal page was configured and made accessible on the Web. The structure of ZIPSE was based on the findings from 108 qualitative interviews with patients, their relatives, and health care professionals, through which numerous information needs were identified. We placed particularly important areas of information, such as symptoms, therapy, research, and advisory services, on the start page. Moreover, we defined 13 quality criteria, referring to factors such as author information, creation date, and privacy, enabling links with high-quality information. Moreover, 19 users tested all the developed routines based on usability and comprehensibility. Subsequently, we improved the visual presentation of search results and other important search functions.ConclusionsThe implemented information portal, ZIPSE, provides high-quality information on rare diseases from a central point of access. By integrating the targeted groups as well as different experts on medical information during the construction, the website can assure an improved search for information for users. ZIPSE can also serve as a model for other Web-based information systems in the field of rare diseases.Registered Report IdentifierRR1-10.2196/7425

show abstract

“…The following study has been conducted against the backdrop of the conceptualization of a central website for rare disease information in Germany (ZIPSE, Zentrales Informationsportal über seltene Erkrankungen or central information portal about rare diseases) [ 17 ] connecting disease unspecific and specific information, as well as quality orientation for patients, their families, and health care professionals at a central platform [ 18 ]. As part of the German National Action Plan for Rare Diseases from 2013 (NAMSE, Nationales Aktionsbündnis für Seltene Erkrankungen) following the European council recommendations [ 19 , 20 ], knowledge transfer is improved through the development of Internet information systems.…”

Section: Introductionmentioning

confidence: 99%

“…As part of the German National Action Plan for Rare Diseases from 2013 (NAMSE, Nationales Aktionsbündnis für Seltene Erkrankungen) following the European council recommendations [ 19 , 20 ], knowledge transfer is improved through the development of Internet information systems. Already existing Internet information is collected and organized to increase the visibility of rare disease knowledge [ 18 ]. Physicians, family members, and patients are critical to this process; they are the major beneficiaries and should profit by effective health information provision.…”

Section: Introductionmentioning

confidence: 99%

Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians

Babac¹,

Litzkendorf²,

Schmidt³

et al. 2017

Interact J Med Res

Self Cite

View full text Add to dashboard Cite

BackgroundDespite diverging definitions on rare conditions, people suffering from rare diseases share similar difficulties. A lack of experience by health professionals, a long wait from first symptoms to diagnosis, scarce medical and scientific knowledge, and unsatisfactory treatment options all trigger the search for health information by patients, family members, and physicians. Examining and systematically integrating stakeholder needs can help design information platforms that effectively support this search.ObjectiveThe aim of this study was to innovate on the group decision-making process involving patients, family members, and physicians for the establishment of a national rare disease Internet platform. We determined differences in the relevance of health information—especially examining quantifiable preference weights—between these subgroups and elucidated the structure and distribution of these differences in people suffering from rare diseases, their family members, and physicians, thus providing information crucial to their collaboration.MethodsThe included items were identified using a systematic Internet research and verified through a qualitative interview study. The identified major information needs included medical issues, research, social help offers, and current events. These categories further comprised sublevels of diagnosis, therapy, general disease pattern, current studies, study results, registers, psychosocial counseling, self-help, and sociolegal advice. The analytic hierarchy process was selected as the group decision-making tool. A sensitivity analysis was used to determine the stability and distribution of results. t tests were utilized to examine the results’ significance.ResultsA total of 176 questionnaires were collected; we excluded some questionnaires in line with our chosen consistency level of 0.2. Ultimately, 120 patients, 24 family members, and 32 physicians participated in the study (48 men and 128 women, mean age=48 years, age range=17-87 years). Rankings and preference weights were highly heterogeneous. Global ranking positions of patients, family members, and physicians are shown in parentheses, as follows: medical issues (3/4, 4, 4), research (3/4, 2/3, 3), social help offers (1, 2/3, 2), and current events (2, 1, 1); diagnosis (6, 8, 9), therapy (5, 9, 7), general disease pattern (9, 4/5/6, 6), current studies (7, 4/5/6, 3), study results (8, 7, 8), registers (4, 1, 5), psychosocial counseling (1, 2, 4), self-help (3, 3, 2), and sociolegal advice (2, 4/5/6, 1). Differences were verified for patients for 5 information categories (P=.03), physicians for 6 information categories (P=.03), and family members for 4 information categories (P=.04).ConclusionsOur results offer a clear-cut information structure that can transparently translate group decisions into practice. Furthermore, we found different preference structures for rare disease information among patients, family members, and physicians. Some websites already address differences in comprehension between those sub...

show abstract

Adopting Quality Criteria for Websites Providing Medical Information About Rare Diseases

Cited by 17 publications

References 10 publications

Rare Diseases on the Internet: An Assessment of the Quality of Online Information

Rare Diseases on the Internet: An Assessment of the Quality of Online Information

Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study

Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians

Contact Info

Product

Resources

About