CHIPPS StrategicPlanningSummary2.02 - National Hospice and ...

ChIPPS Strategic Planning Summary
February 3-5, 2002
Steering Committee Participants:
Betty Davies, Jeanne Lewandowski, Marcia Levetown, Stephen Liben, Danai
Papadatou, Stephen Connor (NHPCO), Marcia Lattanzi Licht (facilitator).
Narrative History
Members of the group reflected upon the group’s beginnings and history, including the
conclave and formation and functioning of the work groups.
Accomplishments
Products: Bibliography on the web site, compendium, white paper, spirituality paper,
fathers project, and educational curriculum.
Lessons learned were many. Some of ideas were beyond the ability of the group members
because personal expertise was lacking. ChIPPS has served as a spin off point for some
of the group. Some folks have used the theme and have done other things with them, e.g.,
Suzanne Toce has used the bib, and so have Ann and Myra in their current study about
decision-making.
ChIPPS focus
Goal: to increase the amount of Pediatric Palliative Care being provided, primarily
through education. There is a great need for workers in the field to have information and
support. The curriculum publication will be an important step. There is a need for
interactive learning and resources, not just written ones. There are basic needs, but also a
wide range of needs for different settings and providers.
There was discussion of the value of bringing people together around the topic. ChIPPS
has managed to keep communication going, and maintained the motivation.
What worked: Getting together was a useful strategy. Getting others involved is always
the goal. Others want to be involved and feel excluded.
Difficulties: Different definitions and political concerns between US and Europeans. The
money problem isn’t that we haven’t asked for it, but that it’s difficult to come by.
Perception that dying children don’t exist among politicians and the general public is an
ongoing problem.
Opinions and guidelines are okay but evidence based work is difficult to get. Research is
different goal than advocating, disseminating, or identifying needs.
Also, there is a need to know how this work contributes and fits with other groups we are
involved in.

Steering Committee
Steering Committees were formed before affiliation with NHPCO. Each person became
leader of the work groups at the conclave except for Danai who then came on board as an
international person when we had no one in the education group. The most successful
aspect involved focusing on a specific job with a time line.
Strengths of steering committee:
Conference calls on a regular basis
Helpful structure.
Facilitation
Task focus with a common vision
Diversity of backgrounds and experiences.
Frustrations:
Integration and incorporation of new members
Keeping the group size workable
Lack of time to know each other and pay attention to group process.
We have outgrown the original structure. There is a need to develop a process for new
members and criteria. There is also a need for a new structure for the steering committee
and the smaller groups.
Role of NHPCO in ChIPPS
Stephen Connor reaffirmed that he and NHPCO are supportive of ChIPPS and committed
to helping it. It’s a natural fit, and ChIPPS wouldn’t be here without them. ChIPPS is
under the research committee of NHPCO.
NHPCO is a non-profit national organization, with few international linkages. NHPCO
members don’t pay dues for work in other countries – diverse views about this. ChIPPS
had not been a truly international group. There is a great deal of work to do in the US,
and it’s hard to branch out beyond. How does ChIPPS work translate across countries?
Some things don’t easily translate (funding), but other things (needs assessment) do.
ChIPPS Goals
With a view to overarching goals and populations related to them:
Education
Research
Advocacy/sensitization
Service resources (development, encouragement)
Networking
The care of dying children is the underlying focus. Given this huge menu of all that is
possible, there is a need to clarify what can reasonably be done by this group or this
group in collaboration with others.

Original purpose of ChIPPS: ChIPPS will work to concretely enhance the science and
practice of pediatric hospice and palliative care, and to increase the availability of state
of the art services to families.
VISION: ChIPPS will work to concretely enhance the science, practice, and
availability of pediatric hospice and palliative care services to families.
NHPCO Goal: To improve the quality of dying in America (there are issues with this and
it may change with new leadership). Would there be a parallel mission statement for
ChIPPS?
MISSION: Through collaborative efforts, ChIPPS will promote education,
advocacy, service improvement, and research.
GOALS:
Individual suggestions for goals are as follows:
1) DP: Conference and workshops surrounding the curriculum (train the trainer)
2) ML: Information dissemination that subsumes education and advocacy. Promotion
of materials already gathered, such as videos, annotated bibs = clearinghouse
3) JL: Getting the current state of information out, e.g., a conference to disseminate info
about the tools that exist (ChIPPS materials and those that others have developed).
4) SL: All inclusive-curriculum for education to get out to the caregivers. People could
attend and receive a certificate for their attendance. This would serve to get out
information, networking, and one-on-one opportunity to teach.
5) BD: Pre-conferences and giving of certificates, information on resources in network.
What are others doing and how do our plans fit with what else is being done?
6) SC: Education = dissemination through information giving. Particular interest in
children in rural areas.
Central themes of goals are information dissemination and education.
Given the above six goals, can we be international or national?
Burdens/barriers: Funding, and how to get the people out there involved in ChIPPS?
Setting the focus on education may make it easier for others to join. Without
international funding, ChIPPS remains national. It may be better to have it national with
some international experts contributing to the effort. A truly international structure is
beyond our means. First, must see what is being done in the US, and the perhaps later
expand out of the country. While the focus is national, international collaborations will be
important. There is a need to share what is being done in other (e.g., UK, Poland,
Greece).
It is clear that we cannot support international focus in its functioning, but we value
collaboration and cooperation internationally.

Functioning and structuring of ChIPPS:
Steering committee, leadership, Workgroup definitions; Membership
Create a new steering committee that has a clear-cut structure, like an executive
committee. It will be important to include some new members, and for some original
steering committee members to carry over. This group would then identify
subcommittees to do specific work (related to the goals). Administrative support from
NHPCO needs to be made clear.
The following people were named to be on Exec Committee for two years, and help with
attaining the goals as planned at this meeting and to create the future for ChIPPS. The
group involves a variety of disciplines and geographical areas.
Names of initial invitees:
Sue Huff
Stacy Orloff
Barbara Sourkes
Fil Nalawajek
Joanne Hilden
Chuck Corr
Suzanne Toce
Paul Brenner
Steering Committee members continuing on to the Executive Committee:
Betty Davies
Jeanne Lewandowski
Marcia Levetown
Stephen Connor (NHPCO)
Planning an initial meeting of group by phone within next 2 months, with plans for a
face-to-face meeting in June in association with IOM report release. Marcia Lattanzi-
Licht’s role as a facilitator will transition through the June meeting. The Executive
Committee will choose a Chair and Co-chair to be the leaders when they meet in June.
NHPCO is willing to commit some resources to this: conference calls, emails, faxes,
continue writing grants, and administrative supports. (RWJ provided money for
compendium. NHPCO is seeking funding for the curriculum and will support its
production. It may take at least 6 months to get published.)
NAME: ChIPPS: Advancing Pediatric Palliative Care
We need a logo, and will develop in the future.

Goals/ tasks that will be focused on during the first year:
1. Curriculum and related training
2. Email newsletter
3. Conference – One focus is the curriculum and additional topics. A conference will be
planned during the next year (100-250 people), in conjunction with NHPCO clinical
conference, March 2004 in Jacksonville, FL.
ACTION PLAN:
Time frame: over next 2-3 years
Discussion:
Reading over goals from discussion of goals: Indicates three major projects, plus the
email newsletter every month. The e newsletter would automatically be broadcast to
people, perhaps developed out of information from executive committee. Anita
(NHPCO) would edit this.
The Curriculum is a tangible product. It can be used as a basis for a course every year, a
one or two day event. It could be made into a certificate program. This course could be
held prior to the NHPCO conference in 2003.
Specific Goals/Projects
1) Reorganize ChIPPS into a new structure
2) Sponsor (a coalition meeting) in conjunction with IOM meeting this summer
3) Develop and distribute an e Newsletter
4) Take curriculum into 2003 meeting with a pre-conference session that leads to a
certificate program.
5) Develop a demonstration project for teaching PPC in rural areas.
(Project was discussed, and would require a needs assessment of people in rural areas to
ensure relevance and buy-in. NHPCO would seek funding for next fiscal year 2002-03.
SC will send out a draft to us for review and additional discussion.)
Educational Effort:
� Design a 1-2 day effort for March 2003 meeting in Jacksonville, FL. Two day preconference
before the NHPOC conference. This will be a PPC 101 course, an
interdisciplinary course.
� NHPOC has certification mechanisms so can do this in the future, but tell people that
“what you have done today will contribute to a certificate”.
� Identify a planning committee and decide what from the content will be included in
this particular event. Ensure a product is available at time it’s being offered:
Danai, Betty, Jeanie, Marcia and Chuck plus interested new members will participate
in planning.
� We will start with basic course or 2003 and work towards developing additional
pieces that will comprise a PPC certificate program. This will be developed over
three years. The committee will submit a proposal to the Executive Committee about

the ongoing development of this educational program for discussion and their support
of the project.
� Overtures will be made by SC to other groups: Millie Solomon (EDC), Betty Ferrell
or Tiffany Levinson (ELNEC), Joanne Hilden (COG – because she is thinking of
adding education into COG).
Other Areas:
Services to families: We have not discussed this aspect in our discussion to date. There
is a need to help families know where to get information and how to find that
information. ML will send out information on a proposal she has developed to everyone
so that it can be considered as a future project. SC will have grant-writing folks explore
the possibilities.
Information dissemination: At this point, our goal is to disseminate info through the
email newsletter that will be sent every two months to everyone on the ChIPPS list.
Anita will regularly ask the Exec Committee to send in information for the newsletter.
The first issue of newsletter should have summary of this meeting, accomplishments to
date, as well as list of new members plus a description of the new members, and a list of
future projects.
First newsletter: Marcia LL will edit the notes that BD has taken and make a draft of it.
Heather will distribute Roster of names on list so we can add to it. She will also forward
the summary of responses to everyone.
Communication to others: When the new Executive Committee formed, there should be a
report of what has happened. This information should be sent to respondents who have
shown they are still interested in ChIPPS.
Funding and other Resource Information:
IOM participants: Payors, Candlelighters, Residency Director, NACHRI, AAP, COG,
SPN, CHI, AAHPM, CMS, Ronald McDonald, Make a Wish Foundation, Children’s
Miracle Network, HPNA (peds nurse group), NINR (Ann Knebel), KLM, APON, Mary
Calloway from PDIA, CHIPS (pediatric financing group).
FUNDING IDEAS:
Eric Clapton, Cindy Bullens (Somewhere between heaven and earth). Mary Chapin
Carpenter, Barbara Bush (daughter died of leukemia).
Gates Foundation – if we knew someone with them.
Hollywood types: Spielberg and Schwarzkopf’s Starbright Foundation,
Tracy Austin – has a camp for children with cancer in Texas
Finding our way.net (Marcia Lattanzi Licht’s and Stephen Connor’s articles, and 13
others. Joanne Hilden and Bruce Himmelstein wrote the Pediatric Palliative Care article).
The entire set of 15 articles can download. It is particularly useful for lay people.