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Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011

BACKGROUND: The Genetic and Rare Disease Information Center (GARD) is a major provider of Web-based information on genetic and rare diseases. Little is known about the type of Web-based information individuals seek about genetic and rare diseases or their reasons for seeking. OBJECTIVE: The objectiv...

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Autores principales: Morgan, Tamandra, Schmidt, Johanna, Haakonsen, Christy, Lewis, Janine, Della Rocca, Maria, Morrison, Stephanie, Biesecker, Barbara, Kaphingst, Kimberly A
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications Inc. 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961701/
https://www.ncbi.nlm.nih.gov/pubmed/24565858
http://dx.doi.org/10.2196/resprot.2916
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author Morgan, Tamandra
Schmidt, Johanna
Haakonsen, Christy
Lewis, Janine
Della Rocca, Maria
Morrison, Stephanie
Biesecker, Barbara
Kaphingst, Kimberly A
author_facet Morgan, Tamandra
Schmidt, Johanna
Haakonsen, Christy
Lewis, Janine
Della Rocca, Maria
Morrison, Stephanie
Biesecker, Barbara
Kaphingst, Kimberly A
author_sort Morgan, Tamandra
collection PubMed
description BACKGROUND: The Genetic and Rare Disease Information Center (GARD) is a major provider of Web-based information on genetic and rare diseases. Little is known about the type of Web-based information individuals seek about genetic and rare diseases or their reasons for seeking. OBJECTIVE: The objective of this paper is to describe the types of Web-based information sought about genetic and rare diseases and the reasons for seeking it from GARD by examining inquiries from 2006 and 2011. METHODS: There were 278 English-language email and Web-based inquiries posed to GARD by lay individuals (ie, patients, parents, and relatives), which were randomly selected from inquiries in 2006 (n=68) and 2011 (n=210) and examined using content analysis. RESULTS: Most often in both years, individuals sought basic disease information (51/68, 75.0% and 132/210, 62.8%; P=.067) and information about treatment (17/51, 33.3% and 62/132, 47.0%; P=.095). Specifically, inquirers requested information about their disease prognosis (6/51, 11.8% and 23/132, 17.4%; P=.347) and made requests for specialists (8/68, 11.8% and 31/210, 14.8%; P=.536). In both 2006 and 2011, a substantial subset of inquirers requested information related to undiagnosed symptoms, representing 16.2% (11/68) and 11.9% (25/210; P=.362) of inquiries, respectively. Inquirers were significantly more likely to have seen a health care provider before contacting GARD (99/210, 47.1% vs 20/68, 29.4%; P=.010) and to ask about clinical research studies in 2011 than in 2006 (24/210, 11.4% vs 2/68, 2.9%; P=.037). In the 2011 data set, the majority of the inquirers were women (201/210, 95.7%). In our 2006 sample, men were the majority source of inquiries (54/68, 79.4%). CONCLUSIONS: Findings from this study indicate that lay people contacting a genetic and rare disease information center most often seek information about disease prognosis, finding a specialist, and obtaining a diagnosis for symptoms. Unique characteristics of individuals searching the Internet for genetic and rare diseases information, includes a growing interest in participating in clinical research studies and a desire to supplement or better understand information discussed during a visit with a health care provider. These efforts represent advancements in patient self-advocacy.
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spelling pubmed-39617012014-03-21 Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011 Morgan, Tamandra Schmidt, Johanna Haakonsen, Christy Lewis, Janine Della Rocca, Maria Morrison, Stephanie Biesecker, Barbara Kaphingst, Kimberly A JMIR Res Protoc Original Paper BACKGROUND: The Genetic and Rare Disease Information Center (GARD) is a major provider of Web-based information on genetic and rare diseases. Little is known about the type of Web-based information individuals seek about genetic and rare diseases or their reasons for seeking. OBJECTIVE: The objective of this paper is to describe the types of Web-based information sought about genetic and rare diseases and the reasons for seeking it from GARD by examining inquiries from 2006 and 2011. METHODS: There were 278 English-language email and Web-based inquiries posed to GARD by lay individuals (ie, patients, parents, and relatives), which were randomly selected from inquiries in 2006 (n=68) and 2011 (n=210) and examined using content analysis. RESULTS: Most often in both years, individuals sought basic disease information (51/68, 75.0% and 132/210, 62.8%; P=.067) and information about treatment (17/51, 33.3% and 62/132, 47.0%; P=.095). Specifically, inquirers requested information about their disease prognosis (6/51, 11.8% and 23/132, 17.4%; P=.347) and made requests for specialists (8/68, 11.8% and 31/210, 14.8%; P=.536). In both 2006 and 2011, a substantial subset of inquirers requested information related to undiagnosed symptoms, representing 16.2% (11/68) and 11.9% (25/210; P=.362) of inquiries, respectively. Inquirers were significantly more likely to have seen a health care provider before contacting GARD (99/210, 47.1% vs 20/68, 29.4%; P=.010) and to ask about clinical research studies in 2011 than in 2006 (24/210, 11.4% vs 2/68, 2.9%; P=.037). In the 2011 data set, the majority of the inquirers were women (201/210, 95.7%). In our 2006 sample, men were the majority source of inquiries (54/68, 79.4%). CONCLUSIONS: Findings from this study indicate that lay people contacting a genetic and rare disease information center most often seek information about disease prognosis, finding a specialist, and obtaining a diagnosis for symptoms. Unique characteristics of individuals searching the Internet for genetic and rare diseases information, includes a growing interest in participating in clinical research studies and a desire to supplement or better understand information discussed during a visit with a health care provider. These efforts represent advancements in patient self-advocacy. JMIR Publications Inc. 2014-02-24 /pmc/articles/PMC3961701/ /pubmed/24565858 http://dx.doi.org/10.2196/resprot.2916 Text en ©Tamandra Morgan, Johanna Schmidt, Christy Haakonsen, Janine Lewis, Maria Della Rocca, Stephanie Morrison, Barbara Biesecker, Kimberly A. Kaphingst. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 24.02.2014. http://creativecommons.org/licenses/by/2.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.
spellingShingle Original Paper
Morgan, Tamandra
Schmidt, Johanna
Haakonsen, Christy
Lewis, Janine
Della Rocca, Maria
Morrison, Stephanie
Biesecker, Barbara
Kaphingst, Kimberly A
Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011
title Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011
title_full Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011
title_fullStr Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011
title_full_unstemmed Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011
title_short Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011
title_sort using the internet to seek information about genetic and rare diseases: a case study comparing data from 2006 and 2011
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961701/
https://www.ncbi.nlm.nih.gov/pubmed/24565858
http://dx.doi.org/10.2196/resprot.2916
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