Connecting patients and families through Disease InfoSearch and accelerating research into health conditions
Individuals diagnosed with a disease feel supported, informed, and empowered when they have credible information immediately following a diagnosis. Disease InfoSearch (DIS) connects individuals with hard-to-find information and other people experiencing the same difficulties. In a single click, DIS ameliorates some of the anguish of a serious diagnosis. DIS was transferred from a paper-based system, and will now benefit from new technologies that allow information aggregation and filtering on the fly. In the most significant advance, we will match researchers with groups of people easily, so that more time and money can be used to carry out research that will lead to treatments and improved quality of life. This is called MatchRx.
About You
About You
First Name
Sharon
Last Name
Terry
http://twitter.com/#!/sharonfterry
Facebook Profile
About Your Organization
Organization Name
Genetic Alliance
Organization Website
Organization Phone
202.966.5557
Organization Address
4301 Connecticut Ave. NW, Suite 404
Organization Country
United States, DC, Washington
Country where this project is creating social impact
United States
Is your organization a
Non‐profit/NGO/citizen sector organization
How long has your organization been operating?
More than 5 years
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Innovation
Entry Form title
Connecting patients and families through Disease InfoSearch and accelerating research into health conditions
What change do you want to bring to the world?
Individuals diagnosed with a disease feel supported, informed, and empowered when they have credible information immediately following a diagnosis. Disease InfoSearch (DIS) connects individuals with hard-to-find information and other people experiencing the same difficulties. In a single click, DIS ameliorates some of the anguish of a serious diagnosis. DIS was transferred from a paper-based system, and will now benefit from new technologies that allow information aggregation and filtering on the fly. In the most significant advance, we will match researchers with groups of people easily, so that more time and money can be used to carry out research that will lead to treatments and improved quality of life. This is called MatchRx.
What are the primary activities of your project?
By continuing to expand the amount of information about conditions and the groups that serve individuals affected by them, we are magnifying the great support and role disease advocacy organizations can provide to others by making it easier to locate them. Twenty years ago, you could only find them by word of mouth. Now, affected individuals, their families, healthcare professionals, and other individuals passionate about a single condition can find that information in a single place together with an aggregation of the credible information available from various sources.
In order to advance our understanding of the conditions, we are building an interface, called MatchRx, that will allow researchers to also search the database to identify advocacy organizations they can partner with in research. One of the biggest barriers in research is identifying interested participants, and DIS is a novel solution that allows researchers to tap into the support groups to collaborate on their projects.
What is innovative about your initiative? How is it a new contribution to the field?
DIS address the support and information needs of individuals who are diagnosed with a condition and their families as they begin to make sense of their world and integrate this new information. Receiving a diagnosis can be a time of overwhelming emotions, and DIS helps by providing a one-stop starting point for both learning about the condition and the advocacy organizations that serve the affected individuals. DIS also helps the advocacy organizations spread the word about their organization and connect with other group leaders so they can learn from one another.
It is novel, in that while there are many sources of information on the Internet, we use the long tail approach of having the groups maintain their own listings, as it is more efficient than a single staff member trying to maintain thousands of listings. We also have partnered with the National Center for Biotechnology Information at the National Institutes of Health to offer access their information in a more user-friendly format. We are currently forging partnerships with other information providers to increase the amount of information about health conditions available at a single location.
We are creating an advanced search feature, MatchRx, that will allow researchers and industry the opportunity to enter in criteria and return groups that fit their needs. Previously this information has lived within the minds of select individuals, and the creation of this type of tool for the community will streamline the identification of potential partners and research participants.
What stage is your project in?
Operating for more than 5 years
Tell us about the community that you engage? eg. economic conditions, political structures, norms and values, demographic trends, history, and experience with engagement efforts.
Genetic Alliance was founded 25 years ago as the support group for all of the disease-specific support groups who were looking for help with capacity building and ways to share their lessons learned. Over our history, we’ve maintained strong ties to the disease-specific organizations who are central to success of DIS. We’ve continually engaged them and modified the tool in response to their feedback. New groups discover us and join the database monthly.
Over the last decade, we realized that our reach is much broader than just to the advocacy organizations as an organization as a whole and as end users of DIS. Healthcare providers use DIS to efficiently identify resources for themselves and their patients in this time when every minute of a healthcare encounter is precious. Additionally, researchers are understanding more than ever how collaborations with advocacy organizations and others in the community can move their work ahead much more quickly.
There are more than 7,000 genetic diseases touching everyone in the world, from heart disease, cancer, and diabetes to the 6,000 or so rarer diseases. These diseases do not discriminate; all socioeconomic groups, demographics, races and ethnic groups are affected equally. We believe that DIS provides a great deal of information to the less fortunate and disadvantaged communities.
Share the story of the founder and what inspired the founder to start this project
Genetic Alliance was founded by a social worker, Joan Weiss, when her son was diagnosed with a heart condition as a baby. She felt no parent should feel as alone as she did then.
I learned of Genetic Alliance when my two children were diagnosed with pseudoxanthoma elasticum (PXE), and I founded PXE International, a disease group to accelerate research on PXE. I was aided by the guidance Genetic Alliance offered. At that time it was limited to helping individuals start support groups.
As I worked to create a research consortium for PXE, I met huge obstacles created by a lack of collaboration on the part of academic and industry researchers. When I learned that on average drug development costs almost a billion dollars per project, takes 17 years, and has a 95% failure rate, I was inspired to create a new paradigm. I realized that it would take a team of teams to move research along for any disease – and that the current siloed models, rife with competition would continue to fail. Disease InfoSearch was born of this passion – my premise was: if disease advocacy organizations, using a long tail aggregation approach, would collaborate in a meaningful way, then we could accelerate this timeline and build in cost efficiencies. I have evidence that this first phase is successful and believe the next one will really accelerate the pace of research.
It is time for the efficiencies and technologies that we have seen transform other industries (music, publishing, computers) coupled with consumer engagement transform the biomedical research landscape.
Social Impact
This Entry is about (Issues)
Please describe how your project has been successful and how that success is measured
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.
Academic and industry scientists contact us regularly for suggestions about which disease to work on, what diseases have which attributes, which conditions have registries and biobanks and what organizations make good research partners. It is not possible for me to answer these questions with the level of rigor that is possible with a well-designed, intelligent, database.
This part of our project has no metrics for success because at this point it is greatly lacking the automation and industrialization necessary for real impact in the world. It is this we seek to develop. Once we have created this next version, we will build in metrics in the search functions and periodically assess the number of research projects that have been accelerated by our work.
How many people have been impacted by your project?
1,001- 10,000
How many people could be impacted by your project in the next three years?
More than 10,000
Winning entries present a strong plan for how they will achieve growth. Identify your six-month milestone for growing your impact
We will have 600 completely fleshed out entries searched by more than 1,000 individuals and scientists. Two research projects will have begun as a match between the disease and the scientist.
Task 1
Complete development of new DIS website with full advanced search functionality, including a MatchRx function, connecting researchers to disease characteristics and cohorts of individuals.
Task 2
Outreach campaign to all groups currently listed in DIS to review and update their listings.
Task 3
Outreach campaign to groups not currently in DIS to join DIS, and outreach to scientists to encourage use of the MatchRx system.
Identify your 12-month impact milestone
2,000 diseases will have complete entries, and 25 research projects will have begun as a result of MatchRx.
Task 1
Continued outreach to disease advocacy organizations, including virtual ones. Viral advertising of the MatchRx feature of DIS.
Task 2
Aggressive marketing and advertising of the resource to all of the specialty clinics, community hospitals and other service venues.
Task 3
Evaluation of the MatchRx collaborations to accelerate improvements in the system in order to facilitate best in class interactions.
How will your project evolve over the next three years?
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 catalogued. Ultimately variation databases with mutations in genes will be associated with the clinical signs and symptoms of the disease, accelerating research.
Sustainability
What barriers might hinder the success of your project and how do you plan to overcome them?
The biggest barrier in this project is securing enough initial funding to successfully launch the expanded tool. We are finding that without a prototype for researchers and industry to look at, they are struggling to see how this tool will be a game changer not only for their research or company’s success but ultimately for the patients and their families that their work benefits. An additional challenge with any web-based product is the speed with which information loses currency. In order to try to preventatively approach this problem, we are building in automated capabilities for the system to send out messages to the organizations after a set period of time has elapsed since their listing has been reviewed. We are also asking each group to maintain their own listing, which is a more sustainable model than having one or two staff members trying to keep the entire database current. This long tail approach will build the team of teams necessary to keep such a massive project current. Further, the individuals who lead the disease advocacy organization have a strong passion for keeping information about the condition current, and making sure those who follow after them (newly diagnosed, health care professionals serving their populations, etc.) do not suffer the same lack of information and connection they did.
Tell us about your partnerships
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. In 2007, we formalized a partnership with the National Center for Biotechnology Information to connect our resources to provide the optimum experience for the end user. Approximately one year ago, we entered into a partnership with Orphanet in France, the largest purveyor of disease information in Europe. The current plan for our collaboration is for them to use our information for their site. Further, we are a collaborator of the Genetics and Rare Disease Information Resource run by the Office of Rare Disease Research. 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.
In other areas of our work, Genetic Alliance has had as many as 500 formally associated partners in the past 5 years alone.
Current annual budget of project, in US dollars
$100,000‐250,000
Explain your selections
In our prior work on Disease InfoSearch, we have received funding from divisions under the Department of Health and Human Services, specifically the Heath Resources Services Administration. In addition, a private foundation provided a small amount of funding for us to build some of the current fields. We have also received funds from industry for the initial creation of DIS about 10 years ago, allowing its first iteration on the Internet to be created.
How do you plan to strengthen your project in the next three years?
This project will be strengthened by embedding it in a number of other projects Genetic Alliance is working on. It forms the foundation for Gateway to Rare and Neglected Disease Research (GRANDRx), a project that forms the overarching work of accelerating research. It is the basis for MatchRx, the ‘dating game’ for researchers and diseases. It will be the ‘Intel Inside’ for GaugeRx – a tool to help researchers and disease organizations assess the best direction to go in, since, in general there are no sign posts to help determine where to put resources in the quest for a diagnostic or a treatment for a disease.
The project will also be strengthened by increasing the technology for outreach and updating. It will also be presented in all of the major medical meetings, where we already present and exhibit our various tools.
Challenges
Which barriers to health and well-being does your innovation address?
Please select up to three in order of relevancy to your project.
PRIMARY
Lack of access to targeted health information and education
SECONDARY
Limited diagnosis/detection of diseases
TERTIARY
Limited human capital (trained physicians, nurses, etc.)
Please describe how your innovation specifically tackles the barriers listed above.
Because the organizational listings and links on topics such as insurance issues are managed by the disease-specific organizations, the leaders are highly motivated to keep the information up to date. The organizations we are partnering with are credible sources with whom we have built partnerships with over time in order to understand the processes used in writing their information. Through the advanced search feature, we’ll help connect previously fragmented resources to accelerate research, which will in turn increase diagnosis and detection of diseases. DIS will also increase the capacity of the limited human capital that exists today, especially in underserved communities. In some instances, no local healthcare provider is aware of these diseases, so this is their only resource.
How are you growing the impact of your organization or initiative?
Please select up to three potential pathways in order of relevancy to you.
PRIMARY
Repurposed your model for other sectors/development needs
SECONDARY
Leveraged technology
TERTIARY
Grown geographic reach: Global
Please describe which of your growth activities are current or planned for the immediate future.
All three of the growth activities are planned for the immediate future. We are launching a new version of Disease InfoSearch by the end of 2011 which will help us repurpose our model and expand our reach through the inclusion of more groups. We are in conversations with companies like Google to determine if their search technology would augment the data collection we have achieved and will scale. We have engaged in collaborations with the International Genetic Alliance and the International Rare Disease Research Consortium so that we can grow the resource globally.
Do you collaborate with any of the following: (Check all that apply)
Government, Technology providers, NGOs/Nonprofits, For profit companies, Academia/universities.
If yes, how have these collaborations helped your innovation to succeed?
By collaborating with these groups, we have been able to leverage the knowledge and expertise each has to offer. Additionally, through connecting our resources, we’ve created a much more powerful and useful tool for the user. Through harmonization, we’ve minimized the disjointedness and identified areas where our work together can make a bigger, more immediate impact than if one organization were to try to do it on their own. We have capitalized on the strengths of each, and helped these partners use each other's resources to achieve their missions, as a by product of our work.
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