Opportunity for you to support research

Hi,

I did not see any discussion on the topic listed below...


If you are interested in supporting valuable research to help improve
children's lives, including those born with Krabbe disease and related
Lysosomal Storage Disorders and Leukodystrophies, please take 10 mins
to complete an online survey and share your experiences.
This opportunity for voices of Krabbe children and parents to be
heard on a national level will help to ensure improved healthcare for
children born in the future.

It would be great for any/all parents participating on this message board
to participate in this survey, as there are unique experiences here that are
vital for those working to improve healthcare. Hearing from you will help
make a difference.

After you read the information below, if you would like
to participate in this very important public comment opportunity, which is
an online survey that should take no more than 10 minutes to complete,
please email me: Micki@savebabies.org and I will connect you to the
opportunity asap.

Thanks in advance for the taking the time to help support this important
research. 10 people have already responded to this opportunity and have
completed the simple and brief survey. Remember, the deadline, which is
quickly approaching is March 5th. Let's see how many KK Message Board
Families we can get to complete the survey, your voices need to be heard
on this one.

Micki Gartzke
Vice President
Save Babies Through Screening Foundation
www.savebabies.org

Public Comment on Patient Experiences

The National Committee for Quality Assurance (NCQA) seeks public
comment on a core set of topics on patient experiences for evaluating
practices that want to serve as medical homes. All topics are based on
patient surveys/experiences of care.

Please tell us what topics of patient experiences you think NCQA should
include when evaluating medical homes.


A medical home is a medical office or clinic where a team of health
professionals work together to provide a new, expanded type of care to
patients. Having a medical home feels like having an "old-style,"
traditional family doctor, but with a team of professionals that uses
modern knowledge and technology to provide the best possible care for
you in one location.

NCQA will consider the recommended topics of patient experience as we
develop the next version of our evaluation criteria.


Members of the public are invited to comment through March 5.

Topics of Patient Experiences


Getting routine care
Getting care after hours
Access to help without making a visit
Wait time
Explains care to you
Listens and answers your questions
Respects you as a person
Seeing the same doctor or nurse
Knows you well
Involves you in decisions about your care
Helps you manage your health
Has confidence in your ability to manage your health
Is aware of your medications
Is aware of care you get from other doctors or places
Follows up on your test results
Getting all of your primary care at one location
Access to your medical records
Asks you about the quality of your care
Office staff


NCQA appreciates the time and effort organizations invest in providing
comments. All feedback submitted within the public comment period is
reviewed by NCQA.



About NCQA

Celebrating its 20th anniversary in 2010, NCQA is a private, non-profit
organization dedicated to improving health care quality. NCQA accredits
and certifies a wide range of health care organizations. It also recognizes
clinicians and practices in key areas of performance. NCQA's Healthcare
Effectiveness Data and Information Set (HEDIS®) is the most widely used
performance measurement tool in health care. NCQA is committed to
providing health care quality information for consumers, purchasers,
health care providers and researchers. For more information, visit

NCQA
1100 13th Street NW, Suite 1000, Washington, DC 20005
Telephone: 202/955-3500 | Fax: 202/955-3599
Customer Support: 888/275-7585
http://www.ncqa.org

Public Comment on Patient Experiences