Finding Quality Information
- What does this diagnosis mean for my child and her future?
- Are there treatments for my child's condition?
- How can I find information I can trust?
- Where can I find another parent who has a similar situation to talk to?
- What services are available where we live?
- Are there support groups for parents like me?
Healthcare Professionals
Care Coordinators
Care coordinators may be available in your primary care or specialty physicians’ offices or a hospital, or through an insurer, public health program, or non-profit organization. Good care coordination includes a knowledge of available resources and how to use them, and skill at listening to families and understanding their needs. Roles of a care coordinator could be:
- In your Medical Home (primary care or specialist office; medical focus, family approach): works with the physicians and family advocates to help with access to services, provides family support, and maximizes use of resources.
- At your Health Care Payer or Insurance: verifies eligibility for insurance and benefits limitations, exclusions, co-payments and deductibles; assists with special situations or appeals; may aid in finding other funding programs.
- With your Home Health Agency: explores choices and other services within the agency and looks at readiness for the next level of care or discharge; provides resources and patient training.
- Working as a Hospital-based Care Coordinator/Discharge Planner: works as part of the health care team and collaboratively with other care coordinators, the family, and other providers on discharge planning and follow-up services.
- Working as a Government Program Administrator (e.g., Medicaid, Social Security): determines eligibility for government programs, works closely with the family, other health care providers, and care coordinators to meet the needs of the child. Approves services and provides referrals and resources.
Parent-to-Parent Connections
Public and Private Organizations
Some Reliable Organizations
Online Medical Information
Knowing When Health Information is Reliable
- Is the site free of spelling, grammatical, or typographical errors? These are a clue to a lack of quality control on the site.
- Are the sources of information listed so that you could confirm the information from elsewhere?
- Is the information consistent with information from other websites, your health care provider, or other trusted sources?
- Do the pages show when an article was first posted, and when it was last revised or updated?
- Is there recent information on the page indicating that it was written or updated recently?
- If the information is older, you may want to look at other sites for recent improvements or research.
- Does the page fail to mention relevant information that you are aware of, such as new research findings or changes in treatment recommendations?
- Is it free of advertising?
- If the site includes ads, are the ads clearly unrelated to the page's information?
- If there are “sponsored posts” or compensation for product reviews, is that information clearly labeled?
- Does the site clearing provide information about its
funding and related policies?
- Is the information supplied as a public service?
- Are there financial disclosures for any advertising?
- Is the site’s funding source obvious?
- Is it clear who wrote and reviewed the information, especially medical information?
- What is the author’s expertise (medical credentials, hands-on professional experience)?
- If information is anecdotal or written by a non-expert, what is the intent and experience of the author?
- If the information comes from a for-profit organization, such as a drug or device manufacturer, what is the purpose of sharing the information?
- Beware of bias if you find questions about injury or harm or links to lawyers.
- Does the “About” or other page explain the purposes of the site and its sponsoring organization?
- Is there contact information for the organization, with a phone number and postal address?
- Does the site provide clear information about how they review and select links to external sites?
- Do other sources you trust, such as government agencies, reputable non-profits, and medical providers link to this site?
Types of Web-Based Health Information
Resources
Information & Support
For Parents and Patients
Genetic and Rare Diseases Information Center (GARD)
GARD provides access to experienced information specialists with current and accurate information - in both English and Spanish.
Created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR) -
two agencies at the National Institutes of Health (NIH).
Genetics Home Reference (NLM)
Sponsored by the National Library of Medicine, this site provides information about genetic conditions for patients and families;
also provides general infomation about genes, chromosomes, genetic mutations, resources related to genetics, and a glossary
of genetic terms.
Healthy Children (AAP)
Offers information and advice about child development, health topics, safety and injury prevention, various medical conditions
and educational issues, and parenting; American Academy of Pediatrics.
KidsHealth
KidsHealth is the largest and most-visited site on the web, providing doctor-approved health information about children from
before birth through adolescence. This site offers numerous easy-to-read articles on kids' health, written for parents, teens
and kids.
Mayo Clinic: Patient Care and Health Information
Introductory information about a wide variety of health conditions; from the Mayo Clinic
MedlinePlus Medical Encyclopedia
From the National Library of Medicine and A.D.A.M.; a comprehensive medical encyclopedia aimed at consumers, with lots of
photographs and illustrations
MedlinePlus Understanding Medical Words
Tutorial created by the National Library of Medicine to learn about medical words with examples.
National Organization of Rare Disorders, Patient Information (NORD)
NORD has a dedicated staff of information specialists to answer your questions about patient resources, networking opportunities,
clinical trials and more.
Orphanet
Orphanet is a consortium involving over 40 countries and coordinated in France to provide a portal for information about rare
diseases and orphan drugs.
Services for Patients & Families in Utah (UT)
Service Categories | # of providers* in: | UT | NW | Other states (5) (show) | | ID | MT | NM | NV | RI |
---|---|---|---|---|---|---|---|---|---|---|
National Support Services, Disab/Diag | 102 | 102 | 103 | 102 | 103 | 102 | 102 |
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.