Pediatric Heart Transplant Study Foundation
PHTS Foundation Board Meeting
Thursday, April 14, 2012
Vela Restaurant at Hilton San Diego Bayfront
10:30am (Pacific)
Minutes
Participants: Anne Dipchand, Elfi Pahl, Craig Collum, Betsy Blume, Kristing Guleserian,
Richard Kirk, James Kirklin, Shelley Miyamoto, Margaret Tresler, Susanna Lenderman
The meeting was called to order by Dr. Anne Dipchand.
1. 2011 Budget/Financial Report
Collum
Craig Collum initiated the meeting by briefly reviewing the budget presented at the
previous night’s PHTS meeting, and asked if there were any questions. He stated that
$685 was collected for dinner, in addition to previous income already submitted.
Monies for 3 people remained outstanding which would bring revenues closer to $750.
We anticipate collecting $102,500 in dues, which will be matched by UAB this year, thus
in allowing for expenses of $211,194, the deficit for 2011 will be $2,719.
For the first quarter, we have received $86,150 in dues, thus our current balance is
$140,000 at this time.
2. Fundraising
Dipchand
General discussion on how to increase revenues. Topics discussed included:
 Tiered membership dues based on centre volume. Pros and cons were
discussed but ultimately it was decided that this may be more detrimental at this
stage in the development of the PHTS Foundation. Last dues increase was in
2009 and was relatively well accepted. Things are well on track this year for
receipt of dues. Will revisit this concept in future years.

Quality Assurance. Discussion around strategically positioning PHTS as a QA
database. Dr Kirklin stated that the STS database is mandated by insurance
carriers. Need to explore establishing ourselves as a QA database similar to the
Intermacs; would need to set up template to have this data easy to enter. Goal
would be to make these reports desirable for hospitals with a concurrent fee
associated with the provision of the report.
Pediatric Heart Transplant Study Foundation
Action Plan;
- Dr Dipchand will speak to Dr Jeff Jacobs regarding 1) the strategic positioning
of STS along this trajectory and, 2) re-explore a potential liaison with STS as
a transplant module.
- Dr Naftel and Margaret will circulate to Board data forms that can be provided
with regard to quality assurance so board can review for content.
Adding QA as a priority will be additional incentive for centers to get data in on
time
3. Foundation Website
Lenderman
Excellent draft of PHTS Foundation website developed by Susanna Lenderman was
reviewed. Very positive feedback and some suggestions for change. Discussion points
included:
 An acknowledgement for UAB.
 Members only, password protected section. Possible things for inclusion:
membership lists and contact information, data, slide sets, meeting minutes.
Slide sets will have PHTS logo and dates of presentation on each slide and be
protected against change prior to downloading.
 Public domain: Discussion around what should be in the public domain, e.g.
slide sets and is there a potential for revenue generation. After some discussion
it was agreed that primarily members would have interested in these slide sets,
and it would not be worth putting a financial charge on them.
 Cost and maintenance. Cost to be determined by Craig. There is infrastructure
through UAB to support. Maintenance and updating would fall within Susanna’s
job description.
i. Susanna will work on a test site to be piloted by the Board.
 A motion was made and approved to get website started
4. Data Use Agreement
 The revised data use agreement was approved by the Board.
 Circulation of the revised DUA to all centres was approved by the Board.
5. Board Member Term
There was discussion regarding duration of term of board members, as well as role of
officers. There was agreement that the officers should not turn over at the same time,
specifically that it would be important to perhaps separate the roles of the President of
PHTS into Science and Foundation administrative and fundraising issues.
Action Plan: A proposal will be developed by Craig Collum and Anne Dipchand and
circulated to board members for discussion at the next Board Tcon.
The meeting was adjourned.
Pediatric Heart Transplant Study Foundation
Respectfully submitted
Elfriede Pahl
Secretary Treasurer