Increase access to support groups and credible information in Korea with the click of a mouse
- Disability
- Health education
- Infant health
- Maternal health
- Mental health
- Reproductive health
- Wellness
Example: Walk us through a specific example(s) of how this solution makes a difference; include its primary activities.
Marketplace: Who else is addressing the problem outlined here? How does the proposed project differ from these approaches?
Founding Story
Sharon
Terry
Genetic Alliance
, Washington
More than 5 years
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Operating for more than 5 years
The goal of this phase of DIS growth is to increase the number of Korean-based groups represented in DIS and the number of Korean individuals (patients, providers, and other interested people) accessing the wealth of information contained within DIS. While the direct focus of this project is our collaboration with the Korean Organization for Rare Diseases, there will be a ripple effect of people impacted, as it is highly likely they will look outside of their geographic borders to connect with others like themselves, even if they speak a different language.
We have engaged more than 1,200 disease advocacy organizations to contribute information to Disease InfoSearch. Thousands of health professionals have communicated to us the importance of this resource for their patients. The men, women and children who use the resource are grateful for the one stop shopping this information provides for them.
We measure the success of this aspect of our project by the numbers of hits and the interactivity between the resource and the associated databases. In Spring 2012, we will launch a new version of DIS with more user-friendly navigation and increased connectivity with other resources.
Genetics is quickly moving into mainstream medicine. Because of this, it will be important for primary care physicians and other healthcare professionals to know about the plethora of resources available in a single click. Patients will not be subjected to the diagnostic odyssey. Researchers will find the right disease and cohort of individuals to match their needs quickly and easily. The individuals who use DIS will also begin to enroll in other tools of Genetic Alliance, such as the Genetic Alliance Registry and BioBank. Further, as new attributes of disease emerge with the advent of whole genome sequencing, these will be cataloged. Ultimately variation databases with mutations in genes will be associated with the clinical signs and symptoms of the disease, accelerating research.
We will have 10 completely fleshed out entries searched by more than 10,000 individuals.
Complete development of new DIS website with full advanced search functionality.
Develop targeted outreach materials for Korean disease-specific organizations with local collaboration.
Outreach campaign to 20 groups, knowing that it will take time to get them all included.
40 Disease groups entries with 20,000 hits – serving 20,000 Korean families and/or healthcare providers.
Assist in distribution of materials at the Korean Organization for Rare Diseases annual meeting in 2012.
Leadership training for the Korean support groups leaders.
Further outreach beyond the work above - presentation at the International Conference on Rare Diseases in Shaghai, 2013.
As an organization, Genetic Alliance has a network that includes more than 10,000 organizations, ranging from advocacy organizations to academia to industry. Disease InfoSearch has partnered with advocacy organizations from its inception 10 years ago. We have collaborations with about a dozen other information purveyors with agreements to use web services and other technologies to transfer information. In the next iteration of DIS, we are excited to partner with additional providers of credible information about health conditions that are based here in the United States and internationally.
With our revamping of Disease InfoSearch, we are strengthening the search tools to allow researchers to more easily identify support groups that are interested in partnering in research. By expanding the utility of the resource to include researchers (in addition to the healthcare providers and patients the tool already serves), more time and money can be used to carry out research that will lead to treatments and improved quality of life.
Genetic Alliance is built on a strong ‘team of teams’ culture. We understand that a hero culture is not sustainable and does not empower either organizations or communities. We empower staff to lead with their strengths and weaknesses. Projects such as this one are a manifestation of an internal culture. Further, we launch movements that enable lay people to be principals in the healthcare enterprise, and this project is a reflection of that environment.
Any project can only increase in value with increased investment and collaboration. Marketing and media will help get the word out about this incredible resource to all who could benefit from it.