HTC Spotlight

WebTracker – Ready for Rollout

ATHN is pleased to report significant progress on WebTracker since the last update in the spring of this year. The main functionality of WebTracker has been finalized and the application was officially launched at the ATHN Data Summit on July 31, 2009. Since that time, the ATHN team’s primary focus has been on training, user management implementation and beta site data mapping. Many thanks to Regions V East and V West for allowing us to provide training at their annual regional meetings. We enjoyed standing room only attendance at our trainings at the ATHN Data Summit and NHF and appreciate all of the HTC staff that took time out of their busy schedules to attend. If you were unable to attend one of these trainings, there will be ample opportunity in the future as ATHN will provide training and support to staff as WebTracker is rolled out to each individual HTC. <read more>

ATHN data.quality.counts

ATHN is proud to announce that 19 HTCs are the recipients of more than $400,000 in ATHNdata.quality.counts funding (Round 2.1) for data management. In addition, ATHN has renewed funding for data management to last year’s winners. This brings the total number of HTCs supported by ATHNdata.quality.counts to 33 with awards through 2009 of $1,300,000. <read more>

From the Board Room

ATHN is pleased to announce recent additions to its staff and Board of Directors. In January, Tami Wood-Lively, JD, MHA will join the ATHN team as its first Director of Affiliate Services. A founding Director of ATHN’s Board of Director’s and Chair of ATHN’s Data Access, Privacy from 2007- 2009,Tami brings considerable experience in health care law and national HTC network coordination to her responsibilities for ATHN Affiliate recruitment and qualification. <read more>

The new year brings two new members to the ATHN Board of Directors, Barbara Konkle, MD, Full Member, Puget Sound Blood Center, Seattle, WA, and Christine Guelcher, ARNP, MSN, PNP, pediatric nurse practitioner and nurse coordinator in the division of hematology at Children's National Medical Center, Washington, DC. <read more>

ATHNready Disaster Preparedness Technology Tools – Emergency Room Personnel Weigh In

The ATHNready disaster preparedness technology tools–the Personal Health Report delivered on a USB flash drive and the web–based HTC–Finder–received high marks from potential users during two separate studies conducted this year.

The most recent study consisted of telephone interviews with emergency medicine physicians and nurses currently working in a wide range of emergency room settings. In addition to examining the perceptions of the ATHNready: Personal Health Report among emergency medical personnel, this study sought insight into the potential benefits and barriers to the tool’s use in emergency departments. <read more>

Research

ATHN Research Think Tank Report

ATHN made major strides in the research component of its mission this past summer when it hosted the ATHN Research Think Tank on July 30th to begin the dialogue about how the ATHNdataset, the limited dataset created using the new WebTracker infrastructure, can best be used for research. More than 20 thought leaders, including government, industry and independent researchers from both ATHN Affiliate and non-Affiliated organizations attended. Ellis Neufeld, M.D., Ph.D., of Children’s Hospital, Boston, moderated the meeting, with opening comments provided by Tom Abshire, M.D., ATHN Chair.
<read more>

Plasminogen Registry Update

ATHN is continuing to encourage HTC providers to register patients with plasminogen deficiency.The registry will determine the approximate number and type of patients in the U.S. and Canada who present with signs and symptoms of this disorder. The survey takes approximately 10 minutes to complete via the web-based data collection tool. No individual patient identifying information is required.
Click here to go directly to the survey.
<read more>

von Willebrand Disease Update

The VWD International Prophylaxis (VIP) study is an initiative of the von Willebrand Disease Prophylaxis Network. The goals of the VIP study are to identify people with von Willebrand disease (VWD) who may benefit from prophylaxis, and establish optimal treatment regimens for joint bleeding, GI bleeding, epistaxis, and menorrhagia.

The study comprises a set of prospective and retrospective investigations. It is international, multi-center, and is conducted under the auspices of the von Willebrand Disease Prophylaxis Network (vWD PN). The VIP is approved by the American Thrombosis and Hemostasis Network (ATHN), the Hemophilia and Thrombosis Research Society (HTRS) and officially recognized by the Von Willebrand Factor SSC. It is registered at www.ClinicalTrials.gov.
<read more>

Baxter Donates ADVOY to ATHN

At the NHF meeting in San Francisco, ATHN announced that Baxter is donating the ADVOY database system to ATHN. ADVOY is the first electronic, web-based patient bleeding and infusion diary to assist hemophilia patients and their healthcare professionals in managing their disease. ADVOY supports therapy management with secure two-way messaging between patients and their hemophilia treatment centers (HTCs).
<read more>

ATHN Presentation Updates

ATHN continues to promote its activities to professionals in the public health community, most recently at the annual meeting of the American Public Health Association (APHA) in Philadelphia and in March 2010 at the National Conference on Blood Disorders in Public Health in Atlanta. <read more>

ATHN Community Collaborations

The NHF annual meeting, the ATHN Community Liaison Group and the Industry Liaison Group meetings brought ATHN leadership face-to-face with patients, advocacy organizations, government partners and representatives of the pharmaceutical industry. Consistent with its intention to be open and transparent, ATHN used these venues to report on the milestones achieved in 2009 and to share plans for 2010. Endorsement for the rollout of the ATHNdataset, ATHNready and ATHNadvoy was top priority. Input into expansion of the ATHN Affiliate network and research agenda were top considerations for the future.

With One Voice

ATHN is working to help clarify many of the questions and confusing terms used when discussing data and specifically health data and healthcare technology.

Data Use and Business Associate Agreement (DUBAA)

The Data Use and Business Associate Agreement (DUBAA) is a legal document that an ATHN-Affiliate is required to sign before ATHN can help the HTC transfer clinical data into WebTracker and use WebTracker in its clinic. The DUBAA

• complies with all HIPAA Privacy Rule guidelines;
• ensures that ATHN as a business associate of the HTC will implement appropriate safeguards to protect against unauthorized disclosure and/or use of the HTCs data;
• authorizes ATHN to use and make available a limited data set for research purposes provided that ATHN will not attempt to identify or contact individuals whose health information is part of the ATHNdataset.

ATHN Patient Authorization

The ATHN Patient Authorization is a written form that explains the composition and intended use of the ATHNdataset and records the patient’s decision to ”opt in” and participate in the ATHNdataset. By choosing to opt in, the patient is allowing the HTC to share their health information (stripped of all 16 personal identifiers) with ATHN and for ATHN to share it with researchers.

ATHNadvoy Consent

The ATHNadvoy consent is a formal approval from current Advoy users that permits Baxter to move the patient’s bleed and infusion information to a secure site under ATHN. Once the HTC consents, then its patients will be asked choose to have their historical data transitioned to ATHN’s stewardship. Both the HTC and the patient must consent to have historical data transitioned to ATHNadvoy. ADVOY data from HTCs and patients who do not consent will no longer be available for access by the HTC, patients or ATHN.

Save the Date!

Join us! ATHN Data Summit 2010, July 29th and 30th in Chicago, IL.

Meet us! March 2010 at the National Conference on Blood Disorders in Public Health in Atlanta.


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