the nord experience - eurordis · an online community that does the following: Ø more effective...
TRANSCRIPT
Online Patient Communities: The NORD Experience Online Patient Communities: The NORD Experience
Prepared for Eurordis Annual Member Meeting Athens May 2009
By Mary Dunkle Vice President of Communications, NORD
Prepared for Eurordis Annual Member Meeting Athens May 2009
By Mary Dunkle Vice President of Communications, NORD
Three conditions set the stage for NORD to become involved in an online community:
Ø Growing recognition that the Internet had special relevance to health care and provided an unprecedented opportunity to help patients
Ø Internet usage trends Ø The fact that NORD is a very “hands
on” organization
Three conditions set the stage for NORD to become involved in an online community:
Growing recognition that the Internet had special relevance to health care and provided an unprecedented opportunity
Internet usage trends The fact that NORD is a very “hands
From an editorial in the British Medical Journal (2004):
Many doctors still underestimate the benefits and overstate the risks of online health resources. Supporting patients’ quest to learn as much as they can about their health condition should be a guiding principle, not the exception, to quality care. For the sickest patients, and those with rare diseases, online support groups can sometimes be more important resources than physicians for many aspects of medical care.
Tom Ferguson, MD Senior Research Fellow Pew Internet and American Life Project
From an editorial in the British Medical
Many doctors still underestimate the benefits and overstate the risks of online health resources. Supporting patients’ quest to learn as much as they can about their health condition should be a guiding principle, not the exception, to quality care. For the sickest patients, and those with rare diseases, online support groups can sometimes be more important resources than physicians for many
Tom Ferguson, MD Senior Research Fellow Pew Internet and American Life Project
Internet trends
Ø On any given day, more people are seeking health information online than are making visits to health professionals
Pew Internet and American Life Project
Ø People take the health information found online seriously: 70 percent said their treatment decisions were influenced by information found online
JAMA Report
Ø More older people are going online, and more than two next generation of seniors (age 5064) are Internet users.
Kaiser Family Foundation
Internet trends
On any given day, more people are seeking health information online than are making visits to health professionals
Pew Internet and American Life Project
People take the health information found online seriously: 70 percent said their treatment decisions were influenced by information found online
JAMA Report
More older people are going online, and more than twothirds (70%) of the 64) are Internet users.
Kaiser Family Foundation
Real People…Real Needs Real People…Real Needs
When Inspire approached us, our hope was to accomplish the following:
Ø Facilitate clinical trial recruitment and retention
Ø Mentoring for small organizations or helping establish new ones
Ø Providing a source of information for people with diseases for which there is no patient organization
When Inspire approached us, our hope was to accomplish the following:
Facilitate clinical trial recruitment and
Mentoring for small organizations or helping establish new ones Providing a source of information for people with diseases for which there is no patient organization
This is what the original NORD/Inspire community looked like: This is what the original NORD/Inspire community
Real Peole…Real Needs
It included discussions, blogs & surveys.
Real Peole…Real Needs
It included discussions, blogs & surveys.
Inspire provided services that were very helpful to NORD in creating the community.
ØThey help us moderate the community…and continue to do so. They moderate for behavior, not accuracy of content. ØThey provided training for our moderators. ØThey provided a framework of rules such as the “more heat than light rule”.
Inspire provided services that were very helpful to NORD in creating the community.
They help us moderate the community…and continue to do so. They moderate for behavior, not accuracy of content. They provided training for our
They provided a framework of rules such as the “more heat than
A sampling of topics showing how the community typically is used:
Ø A member posted a notice about a rare type of dwarfism, asking “Are there others out there with this disorder?” She received numerous responses including links to a support group and a patient registry.
Ø A member from a small patient organization asked for advice on writing grant applications.
Ø A member of NORD’s Board posted a notice about the free longdistance medical air transportation provided by his nonprofit organization.
Ø All postings must be noncommercial in nature.
A sampling of topics showing how the community typically is used:
A member posted a notice about a rare type of dwarfism, asking “Are there others out there with this disorder?” She received numerous responses including links to a support group and a patient
A member from a small patient organization asked for advice on writing grant applications. A member of NORD’s Board posted a notice about
distance medical air transportation profit organization.
commercial in nature.
After a year, the site was redesigned because the Inspire business model involves linking communities.
Ø Now members may participate in more than one community. There are 66 communities with 100,000+ members.
Ø Navigation among the communities is easy and is encouraged.
Ø The down side is that this business model requires a certain degree of uniformity among communities.
After a year, the site was redesigned because the Inspire business model involves linking
Now members may participate in more than one community. There are 66 communities with 100,000+ members. Navigation among the communities is easy and is encouraged. The down side is that this business model requires a certain degree of uniformity among communities.
The redesign resulted in a loss of sense of “ownership” for NORD.
Ø We’ve only recently begun to be active in the community again.
Ø Our RN and genetic counselor now monitor it daily.
Ø The redesign was also confusing and unsettling to members.
Ø We recently posted the question: How can we make this more helpful?
The redesign resulted in a loss of sense of “ownership” for NORD.
We’ve only recently begun to be active in the community again. Our RN and genetic counselor now
The redesign was also confusing and unsettling to members. We recently posted the question: How can we make this more helpful?
Now, we’re trying to determine what works and what doesn’t…and how best to address any shortcomings.
ØMembers may participate in more than one community. ØNavigation among communities is easy. ØThe business model requires uniformity among communities.
Now, we’re trying to determine what works and what doesn’t…and how best to address any shortcomings.
Members may participate in more than one community. Navigation among communities is
The business model requires uniformity among communities.
Responses to our question:
Ø Disease name should appear in headline or sub head for each posting
Ø There should also be an undiagnosed category for postings
Ø Forum would be more user more structured: lack of organization is a problem
Ø There’s a resistance to change; a feeling that the previous redesign created confusion
Responses to our question:
Disease name should appear in headline or sub
There should also be an undiagnosed category
Forum would be more userfriendly if it were more structured: lack of organization is a
There’s a resistance to change; a feeling that design created confusion
“Clinical Broadcasts” are letters we send to people who have requested information on specific rare diseases.
Ø Letters on NORD letterhead Ø Sent to patients and families from NORD’s
main database Ø NORD doesn’t endorse studies Ø Sponsors review letters beforehand Ø NORD honors its promise to patients never to
share, rent or sell their names
“Clinical Broadcasts” are letters we send to people who have requested information on
Letters on NORD letterhead Sent to patients and families from NORD’s
NORD doesn’t endorse studies Sponsors review letters beforehand NORD honors its promise to patients never to share, rent or sell their names
What’s next? Our hope ultimately is to have an online community that does the following:
Ø More effective use of online community for advocacy
Ø More effective use of community for sharing information about diseases and resources
Ø Support fundraising for research and other programs/services
Ø Serve as a bridge between patient organizations and medical experts for more effective mobilization on issues such as Social Security
What’s next? Our hope ultimately is to have an online community that does the following:
More effective use of online community for
More effective use of community for sharing information about diseases and resources Support fundraising for research and other
Serve as a bridge between patient organizations and medical experts for more effective mobilization on issues such as
We would also like to facilitate patient recruitment for clinical trials.
Ø Currently, there are approximately clinical trials in the U.S. and delayed at least one month because of unfulfilled enrollment. (CenterWatch)
Ø Very few patients are even aware they are eligible to participate in clinical trials. And only 30 percent of participants say they learned about a trial through their primary or specialty healthcare provider. (Institute of Medicine of the National Academy of Sciences)
Ø Less than 6% of the eligible patients participate in trials studying illnesses that have no treatment. (Center for Information and Study on Clinical Research Participation)
We would also like to facilitate patient recruitment for clinical trials.
Currently, there are approximately 50,000 clinical trials in the U.S. and 80% will be delayed at least one month because of unfulfilled enrollment. (CenterWatch) Very few patients are even aware they are eligible to participate in clinical trials. And only
percent of participants say they learned about a trial through their primary or specialty
care provider. (Institute of Medicine of the National Academy of Sciences)
% of the eligible patients participate in trials studying illnesses that have no treatment. (Center for Information and Study on Clinical Research Participation)
We want to move beyond simply providing emotional support…to facilitate action that produces results. We want to move beyond simply providing emotional support…to facilitate action that produces results.
