Proj collaborate design phase planning doc

Project Collaborate
For the Childhood Cancer Community

Design Phase Planning Document
Version control: December 2, 2011
Document Author: Steven L. Pessagno

1/22/2014

Confidential: For Planning Purposes Only

1

Project Collaborate

Governance Approach
for the Design Phase

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2

Scope

Project Collaborate – Design Phase

Charter
Problem / Opportunity Statement

Scope Considerations

The childhood cancer community is highly fragmented for
understandable reasons. As a result, coordination among the
myriad stakeholders – childhood cancer charities and advocacy
organizations, the pediatric oncology medical community, and
individual advocates – can be quite complex; yet, the benefits of
collaborating on specific, clearly defined shared objective(s) are
potentially significant for the ultimate “customer” – children with
cancer and their families.

In: Collaboration and interface enhancement/coordination among
stakeholder groups who are exclusively focused on creating a
world without childhood cancers; e.g., childhood cancer
charities
funding
research
and
family
support
services, individual advocates, childhood cancer advocacy and
awareness organizations, coalitions focused specifically on
childhood
cancer
causes,
pediatric
oncology
researchers, clinicians, and allied health professionals

Voice of Customer

Out: Interface enhancement/coordination between the childhood
cancer community and other cancer organizations (i.e., those that
are not childhood cancer – specific), pharmaceutical
companies, legislators.
NB: Scope of services that the coalition will provide will be defined
in the business plan

A mechanism to facilitate idea generation, information sharing, and
tactical coordination on specifically defined and agreed initiatives
while preserving the identities of the various childhood cancer
organizations is seen to have value-added potential to better
enable the stakeholders across the community deliver on their
respective missions and amplify their ability to create a world
without childhood cancer.

Project Team Structure / Governance
See next slide

Key Deliverables

Interdependencies
TBD as project gets underway

Operational Practices

Meetings
• Working Team:Weekly, 1 hour Friday afternoons (ad hoc as
10/7/2011: Governance plan for Design phase work
necessary); pre-reads by COB the preceding Wed.
11/4/2011: Draft recommendations for business plan Exec Summary and
• Advisory Team: Schedule TBD … likely Nov & Dec; pre-reads
Strategy Summary, for November Advisory Sessions
approximately 1 week in advance
Guiding principles
12/2/2011: Draft recommendations for business plan Mgt Summary and
• Team members to operate according to project guiding principles &
Financial plan, for December Advisory Sessions
values (see slide after Project Team Structure & Governance)
01/6/2011: Transition plan from Design Phase to Implementation Phase
• If a team member is unable to attend a meeting, then s/he should
send input on the agenda items and will accept any decisions made at
NB: Milestone
3
1/22/2014 dates likely subject to change
Confidential: For Planningthe meeting.
Purposes Only

Scope


Governance
PROJECT MANAGEMENT Key Responsibilities
100% dedicated to project

PROJECT MGT

Project plan development / execution
Meeting mgt: Working Team, Advisory Team, ad hoc
meetings

WORKING TEAM
Draft Business Plan
(incl. Op Model)

Identify
risks, actions, issues, interdependencies, and
decision; facilitate mgt, resolution, and closure
(RAIID)

Meeting Mgt

Meeting Mgt

ADVISORY TEAM

Synthesize inputs for Working Team for operating
model and business plan development
WORKING TEAM Key Responsibilities
Meets weekly (1 hour) + 10 hrs/week
Develop, implement communication plan
Engage stakeholders
Develop recommendation for collaboration
operating model

Input / Feedback

Create draft business plan
Sign-off w/ Advisory Team on final plan for
implementation

ADVISORY TEAM Key Responsibilities

Facilitation

Advisory sessions to be set up in Nov & Dec; likely to

require 4-6 hours in each month
Provide input / feedback into operating model and
business plan proposals

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Sign-off w/ Working Team on final plan for
implementation

4

Scope


Governance
PROJECT MANAGEMENT
Steve Pessagno / GlaxoSmithKline “loaned
executive” (July 2011 – Jan 2012)

PROJECT MGT

WORKING TEAM
Draft Business Plan
(incl. Op Model)

Meeting Mgt

Meeting Mgt

ADVISORY TEAM

Input / Feedback

Facilitation
Please note that these teams are intended to be
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Confidential:
transitional, for the Design Phase only For Planning Purposes Only

WORKING TEAM
Team composition may change
Vickie Buenger / Individual community
representative
Maureen Lilly / Children’s Cause for Cancer
Advocacy
Joe McDonough / B+ Foundation
Steve Pessagno / project mgt
Kris Rech / Individual community representative
Robyn Raphael/ Keaton Raphael Memorial
Foundation
Liz Scott / Alex’s Lemonade Stand Foundation

ADVISORY TEAM
See next slide

5

Project Collaborate

Advisory Team
As the collaboration strives to be wholly representative of the childhood cancer community, leaders representing key
stakeholder groups should be consulted to help develop, shape, and finalize the business plan

Research & Treatment
Awareness
Community
representatives
Jeremy Bliler
Amy Bucher
Meg Crosset
Dan Feltwell
Karla Flook
Mark Mozer

Collaborating to Create a World
without Childhood Cancers

NB: each of the orgs on the
Advisory team contributes
to awareness-raising efforts

Family Support Services

Advocacy
Alliance for Childhood Cancer /
George Dahlman, Karen McKinley
Children’s Cause for Cancer Advocacy / Susan Weiner
Kids v Cancer / Nancy Goodman
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Alex’s Lemonade Stand Foundation / Jay Scott
Bear Necessities / Kathleen Casey
COG Foundation / Peter Adamson
Cookies for Cancer / Gretchen Witt (ad hoc)
CureSearch / John Lehr
Curing Kids Cancer / Grainne Owen
Hyundai Hope on Wheels / Zafar Brooks
I Care I Cure / Beth-Ann Krimsky
IronMatt / Joanne Romano
Jeff Gordon Children’s Foundation / Trish Kriger
Pediatric Cancer Res Foundation / Nancy Crane
PLGA Foundation / Amy Weinstein
Quad W Foundation / Lisa Tichenor (ad hoc)
Rally Foundation / Dean Crowe
Solving Kids Cancer / Scott Kennedy (ad hoc)
St. Baldrick’s / Kathleen Ruddy
Team Connor / Joy Cruse
NB: Some orgs also provide family services


Am Children’s Cancer Org / Ruth Hoffman
ConKerr Cancer / Gavin Kerr
Evan’s Victory Foundation / Gavin Lindberg
Evan Dunbar Foundation / Tom Dunbar
Children’s Onc Camping Assoc/ Dave Smith
SuperSibs / Melanie Goldish

6


Team Operating Principles
 Buy into and support the project charter
 Be decisive while focusing debates based on thorough review of pre-reads and
the facts
 Share responsibility for team decisions
– Avoid: Not speaking up at meetings, deferring to post-meeting “offline”
discussion that is not in support of final decisions and/or recommendations
(even when you agree to disagree)
 Acknowledge where the ambiguity and uncertainty in the decision is, and make
that part of the conversation
 Respect others’ ideas; at the same time, challenge and accept challenge
 Be an active listener
 Clean up misunderstandings
 Communicate clearly all decisions and the rationale underlying decisions

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7

DECISION: The Masterful approach will be employed, with Emergent principles blended in

Change Management Approaches
•
•
•
•
•
•
•
•
•

What‟s to be done is set top down and tightly controlled
How to do it? You follow prescribed steps and recipes
People get given the same messages from the centre
Change is driven through separate projects
Change projects are rolled out from the centre”
Not much investment in building change skills 100%
alignment – you‟re in or you‟re out
Leaders say – “keep it simple, just go do it”
You engage people to inform and get “buy in”

•
•
•
•
•

Instructions

Frameworks

A few
hard rules

Tool kits
•
•
•
•
•

Centralised direction with detail &
accountability left to local
management
Standard tools and templates are
handed out to the field for local
implementation
“Pick „n mix” – people can select
what they need to do at local level
Content is defined, the process is up
to you
Though, support teams & “help
desks” may be provided on how to
implement

What‟s to be done is set top down, tested with others, and
open to change
Change is guided by a common plan, roadmap, agreed
projects and consistent language
People are involved to identify & sense what‟s really going
on & build their responsibility & capability for figuring things
out
Build skills in leading change, including how to help people
through it
Establish networks to build connections across the
organisation
Figure out who‟s important for the change - get and keep
them on board

•
•
•
•
•
•
•

Within an overall purpose, the direction gets adjusted as
you go and make sense of what‟s needed
Leaders establish a few “big rules” that guide what you
do
People can then get on with things as they see fit
Start in a small way and build up from there
Use informal networks to build understanding & energy
Work step by step – no need to figure out the whole plan
out in advance
Go to the hot spots where things are bubbling up and
make them bigger

Project Collaborate

Project Plan MACRO VIEW
July

Aug

Sept

Oct

Nov

Dec

Jan

Feb

Mar

Apr

 Diagnosis
VoC (qual): C3U
Members
VoC (qual):
Researchers

Align on Problem
Statement to be
Solved For

CCC Landscape
Assessment

Decide on C3U Path Forward

Design
9/21: PAC2 Workshop
Ongoing stakeholder engagement
Collaborative models
10/21: Model recommendation
research
Verify change mgt approach

Business Plan Development
See next slide for more detail
Determine
Advisory
stakeholders

11/11: Draft plan
Advisory
Review/Input

Finalize
plan

 Implementation

12/16: Final business plan for implementation;
tollgate to proceed to implementation planning

1/6: Draft implementation plan

TBD per Design*
Secure funding and staffing resources*
Formalize governance*
Kick-off communications

 Embed /
Sustain

Legend

Key Event /
Deliverable

Tollgate / Key Decision

Dependency

LAST UPDATED: Oct 7, 2011

Project Collaborate

Draft Business Plan

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10

November Advisory Sessions: What We Plan To Cover
Executive Summary
Vision
Mission
Values
Value proposition
Scope of services
Strategy Summary
Strategy map & key deliverables
Goals
Objectives
Management Summary
Organization structure
Roles & responsibilities
Membership base and structure
Governance plan
Staffing plan
Financial Plan
Funding model
Key assumptions
Projected cash flows
Projected balance sheet
Long-term plan
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“What we propose to do”

For Advisory Team Input &
Feedback in November

“How we propose to do it”
For Advisory Team Input &
Feedback in December and
January


11


Problem & Opportunity Synopsis
Cancer persists as the leading cause of death by disease among children & adolescents in the United States, and
most survivors will experience significant debilitating complications that result from existing treatments
(developed for adults); unfortunately, only two drugs have been approved specifically to treat a pediatric cancer
in the last 20 years. These and other key facts about childhood cancers do not seem to be well understood by
the general public, policymakers and government officials, potential donors, and even the general medical
community and biopharmaceutical manufacturers.
A greater degree of more accurate awareness is needed.
In addition, research & treatment efforts and support services for pediatric cancer survivors & their families
require greater funding from both public and private sources in order to increase support, accelerate progress to
develop age-appropriate therapies, and, eventually, achieve cures for all pediatric cancers.
Because the childhood cancer community is fragmented, the community – and the people it serves – will benefit
from greater levels of coordinated action where common goals and objectives exist across stakeholders who
desire to collaborate in a way that leverages their unique strengths, minimizes waste of precious resources and
expertise, and ultimately drives better outcomes for patients and their families.

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Vision  Mission  Goals & Objectives for Years 1 & 2
Vision

Create a world without childhood cancers.

Mission

Foster and sustain greater levels of collaboration, information exchange, learning, and coordinated action across the
childhood cancer community through agreed upon initiatives in the areas of advocacy, awareness building, family
services, and/or research & treatment.

Goals

A

B

C

D

COLLABORATION INFRASTRUCTURE
Establish and embed a national network across
the childhood cancer community to facilitate
coordinated action and collaboration where
agreed
AWARENESS
Elevate childhood cancer awareness nationwide

RESEARCH & TREATMENT
Optimize research efforts of network
organizations to amplify the impact of funds
raised where appropriate and agreed
FAMILY SUPPORT & RESOURCES
Increase awareness of and collaboration among
organizations providing family support &
resources

Objectives
A1: Establish governance for decision-making, prioritization, and budgeting







A2: Arrange “seed” funding for Year 1 and develop long-term funding strategy
A3: Develop and implement a network staffing plan

B1: Create, distribute a nat’l media campaign to stimulate general public
responsiveness; update the campaign annually
B2: Create, maintain a fact repository of CC facts, figures, and issues; launch a virtual
communication mechanism to the general public by Q3 2012
C1: Create, maintain a central database of research being funded by network
participants; launch by Q3 2012
C2: Develop a business process to help align funders and researchers on
barriers, gaps, and areas of breakthrough progress
D1: Create a mechanism for orgs to share info and collaborate on providing family
support services by Q3 2012
D2: Develop, maintain, and launch a comprehensive national database of orgs providing
family support & resources by Q3 2012

ADVOCACY
E1: Support annual Advocacy Day in Washington DC
Facilitate integration of policy and advocacy
E2: Provide timely information about federal policy issues and advocacy
efforts on relevant childhood cancer causes Confidential: For Planning Purposes Only
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opportunities, and facilitate coordinated action among network members

E



13


Vision

Create a world without childhood cancers.

Mission

Foster and sustain greater levels of collaboration, information exchange, learning, and coordinated action across the
childhood cancer community through agreed upon initiatives in the areas of advocacy, awareness building, family
services, and/or research & treatment.

Goals

Objectives

A COLLABORATION INFRASTRUCTURE
Please note: embed a national network across
Establish and
A2:
the childhood cancer community to facilitate
The goals & objectives as currently proposed Arrange “seed” funding for Year 1 and develop long-term funding strategy
should be considered foundational at this point;
coordinated action and collaboration where
i.e., a agreed starting point.
good



ThoseAWARENESS be serving on the permanent Governance body ultimately will be responsible for
who will
B
Elevate childhood cancer awareness nationwide
finalizing the goals & objectives. Once that is done, a detailed tactical plan can be developed to
achieve the goals & objectives



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Objectives

Possible Metrics


Milestone: Delivery of plan by end of Q1 2012

A2: Arrange “seed” funding for Year 1 and develop long-term funding strategy

$: Securing seed funding for Year 1 operating expenses


B1: Create, distribute a nat’l media campaign to stimulate general public
responsiveness; update the campaign annually
B2: Create, maintain a fact repository of CC facts, figures, and issues; launch a virtual
communication mechanism to the general public by Q3 2012

Milestones: Launch of approved facts & figures library;
finalization of approved message strategy and public service
announcement campaign
# media outlets that run PSA
# of hits to social media platform
Awareness measurements pre- and post-campaign

C1: Create, maintain a central database of research being funded by network
participants; launch by Q3 2012

Milestones: launch of database by Q3 2012; finalization of
ways of working for aligning funders and researchers

C2: Develop a business process to help align funders and researchers on
barriers, gaps, and areas of breakthrough progress

Convening of summit between funders and researchers, with
published alignment on gaps and areas of breakthrough
progress / identification of co-funding opportunities

D1: Create a mechanism for orgs to share info and collaborate on providing family
support services by Q3 2012

Milestone: launch of collaboration / info sharing mechanism
by Q3 2012; launch of database of orgs providing family
support & resources

D2: Develop, maintain, and launch a comprehensive national database of orgs providing
family support & resources by Q3 2012
E1: Support annual Advocacy Day in Washington DC

TBD

E2: Provide timely information about federal policy issues and advocacy
opportunities, and facilitate coordinated action among network members


15


Internal Values for the ‘Network’
 Put the children and their families first in everything we do
 Assume positive intent

 Enable the community while being mindful not to compete with its participants or
duplicate projects/programs/services that they provide
 Be accountable and take ownership of one’s commitments within the collaborative
 Be cost effective with resources

 Be inclusive and collaborative **
 Help give voice to the community, and amplify it in a coordinated fashion
 Stay action-oriented and flexible
 Apply standards of excellence to the collaboration that are consistent with your own
standards and/or those of your organization
* This value will need to be validated pending final decisions regarding membership composition; it definitely refers to being inclusive and collaborative with
respect to those who are a part of the network. If membership is set up to be more exclusive, then this value would require qualification.

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16


Value Proposition
The network effectively advances specific childhood cancer causes by unifying the
childhood cancer community through broad-based collaboration that leverages the
strengths and expertise of its individual members and avoids duplication of effort at a
national level.

For individuals and organizations committed to creating a world without childhood
cancers, _____________ is a national network dedicated to fostering and sustaining
greater levels of collaboration, information exchange, and learning across the
childhood cancer community through agreed upon initiatives in the areas of
advocacy, awareness building, family services, and/or research & treatment. Such
initiatives are not within the remit of any existing childhood cancer organization and
cannot be effectively or efficiently delivered in the absence of collaboration.
The network provides a mechanism for planning and carrying out broad-based
collaboration efforts in the childhood cancer community. Ultimately, ____________
provides value to network participants by allowing them to deliver on their individual
missions while participating in both short-term and durable collaborative initiatives
fostered by dedicated resource(s) to guide the collaborative process in a way that
ameliorates fragmentation across the community.
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17

“soft” benefits


Benefits that can be
directly measured

Value Proposition

The network effectively advances specific childhood cancer causes by unifying the childhood cancer community through
broad-based collaboration that leverages the strengths and expertise of its individual members and avoids duplication of
effort at a national level.
 Relationship- and trust-building among
network members / participants

Primary Customers:
Network Participants

 Information sharing and cross-promotion among members: who’s doing what, successes best practices, opportunities to work together

More comprehensive, readily
available information on the
research & treatment landscape
(gaps, areas of breakthrough
progress, co-funding opps)
 Opportunities and ease
to co-fund larger research
projects

 In impact of funds raised
by member orgs for
research & treatment

2ndary Customers:
Pediatric Cancer
Patients, Survivors, a
nd their Families

Stronger capability to facilitate
coordinated action across the
community

Tighter integration of
national and grass-roots
advocacy efforts

 In $ funding for
research, new
treatments, family support &
resources

Greater levels of more
accurate awareness about
childhood cancer causes

 $ for member orgs

Better, faster access to shared
information and resources for patient
and family support

↓ Waste in time
of human
resources

 # of grass-roots
advocates and
volunteers

 Efficiency in
leveraging, deploying
existing resources w/in the
network
Enhanced
loyalty, commitment of
existing
donors, advocates, vol
unteers

Accelerated advances in research &
treatment / new cures for childhood
cancers

Enhanced levels / types of support and
resources for
patients, survivors, and/or their
families

18

Project Collaborate

Landscape Positioning
Generally speaking at a macro level, the childhood cancer community can be thought of as operating
somewhere between Cooperation and Coordination. The proposed network will aim to move the community
rightward to Collaboration over time; key variables in the network’s ability to do this are:
•Investment and outcomes required for what the community agrees to work on collaboratively
•Degree of commonality of goals and objectives across stakeholders
•Cultural change in how stakeholders currently work together versus what this looks like under true collaboration

Cooperation

Coordination

Lower intensity

Higher intensity

Shorter-term, informal
relationships

Longer-term effort around a
project or task

Shared information only

Some planning and division
of roles

Separate
goals, resources, and
structures

Collaboration

Some shared resources,
rewards, and risks regarding
collaborative initiatives
undertaken

More durable and pervasive
relationships
New structure with
commitment to common
goals
All partners contribute
resources and share rewards
and leadership

Adapted from: C Lukas, R Andrews. Four keys to collaboration success. See www.fieldstonealliance.org/client/articles/Article-4_Key_Collab_Success.cfm

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19

Proj Collaborate – Design Phase
Strategic direction for CC community
Follows the direction
from the community

0

25

50

75

100

Sets the direction for
the community

Fundraising
Raises no money
0

25

50

75

100

75

Active organizer of cc
community meetings and
facilitating partnerships
100

75

The “voice” of CC orgs;
interacting with media and
gov’t agencies frequently
100

Facilitator
Passive role
0

25

50

Aggressively raises
money

External Visibility
Behind the scenes
0

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25

50


20

Funder
No funding role at all
0

25

50

75

100

Funds research
and/or family
assistance programs

Locally or Nationally Oriented
Local

National
0

25

50

75

100

Portal for the CC Community

Exclusive to certain groups
and/or types of CC
0

25

50

75

100

A "go-to" place;
repository of facts /
activities; research/org
directories

“Membership” Exclusivity v Inclusivity
Exclusive

Inclusive
0

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25

50


75

100

21

Narrative to come

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22


Scope of Services
Out

In

Network Operations
Business plan for the network (incl.
budget for operating expenses)

Governance for determining collaboration
projects prioritization and funding
Management of standards for network
participation and rules of engagement
Budget and program management
resource(s) for approved initiatives

Grass-roots fundraising
Lobbying (participates can take part in
lobbying efforts as they see fit, but the
network does not employ lobbyists)
Capability building that is general in
nature and not specifically tied to an
agreed goal and/or objective of the
network

Network Services
Cross-promotion of network members’
events, successes, key initiatives
National directory of participants; ‘seal of
authentication’ for member organizations

Network Web site / portal
National network meeting (1-2 per year)
Capability building (as this pertains to
goals and objectives of the network)

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Project Collaborate

Operating Model

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24

Sustainability
Predictors of Sustainability

Barriers to Sustainability

Leadership

Governance challenges

Participant diversity

Structural issues

History of collaboration

Lack of funding for core
operations

Structure

Resource diversity
Sustainability plans
Community buy-in

Turf battles
Leader and member
turnover
Shifting priorities

Source: Developing a Conceptual Framework to Assess the Sustainability of Community Coalitions Post-Federal Funding. Presented to the
Assistant Secretary for Planning and Evaluation, US Dept of Health and Human Services. 2001; Jan 7. http://aspe.hhs.gov/health/reports/2010

Sustainability
Predictors of Sustainability

“Critical to Quality” factors for proposed model

Leadership
Continuity of l’ship over time helps to facilitate sustainability

Participant diversity
The more diverse, the better

History of collaboration
Structure
Clear operational guidelines; program mgt policies/procedures; governance and composition of
governance team (professional + grassroots mix)

Resource diversity
Political, financial, institutional; money, people, goods, and services
Obtaining funds from a mix of dues, community donations, financial partners, in-kind
contributions, grants, contracts

Sustainability plans
Goals, objectives, sustainability strategies: have them and continuously evaluate them

Community buy-in

Sustainability
Barriers to Sustainability
Governance challenges
Must clearly define responsibilities of any steering committee, esp. vis-à-vis any coalition staff
When the steering committee overrides the rights of individual members

Structural issues
Few barriers to exiting the coalition; members have divergent structures and work cultures;
balancing time and commitment between the coalition and a member’s “home organization”

Lack of funding of core operations
Must account for more than just project $; i.e., $ needed to convene members, hire staff, build
collaborative capacity and plan for the future

Turf battles
Leader and member turnover
Shifting priorities


Sustainability
What do we want ‘Sustainability’ to stand for here?



Continuing the collaboration network itself
Or

To develop and institutionalize programs and activities within the existing
community



Key Assumptions
Question(s)

Assumption(s)

Will the entity be legally incorporated? If so,
what is the planned legal entity type?

TBD

Will the organization collect and raise funds?
Will it be set up as a charity?

The entity is presumably going to need to be set up so that it can accept
grants / funds and/or fees from its members for the sole purpose of
paying for the operating expenses of the collaborative. The collaboration
will not be a grassroots fund-raising entity to raises money to help fund
childhood cancer research and provide family support services, so it will
not be set up as a charity.

Will the entity charge its members dues

TBD

Will the organization be dispensing funds or
making grants in its own name, independent of
its members?

There are no plans to set up grant-review and funding infrastructure for
the organization. However, member organizations that do fund research
may decide to co-fund a novel research project that they could not
otherwise fund on their own; here, the intention would be to use existing
infrastructure for grant review, funding, and progress reporting

Will the entity engage in lobbying efforts?

There are already organizations that lobby for childhood cancer causes;
the collaboration is not intended to be a lobbying organization. It can
and will work with those other organizations to assist with advocacy
efforts through communication to its members. It is not expected for the
collaboration to hire lobbyist personnel – either internally or via a 3rd
party contract arrangement.

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29


Key Assumptions

Question(s)

Assumption(s)

Will the entity have paid staff?

It is expected that dedicated resources will be needed to
operate the collaboration. TBD is whether that staff would be
employees of the organization, contract staff, or employees of
an association management company

Will the entity have a Board of Directors?

The governance structure has not been decided; it is likely that
there will be some type of Advisory mechanism, and that
members of this group would be elected, serve for a specified
term (1-3 years), and serve in this capacity on a volunteer
basis

Who will maintain the entities assets (Website,
intellectual property protections etc.?)

This will be determined once the model is agreed

Who will handle the administration and operations of the
entity (bookkeeping, document retention, etc.)?

It is expected that dedicated resources will be needed to
operate the collaboration. TBD is whether that staff would be
employees of the organization, contract staff, or employees of
an association management company.

Has a name for the entity been decided upon ;if so, is it
trademarked

A decision on a permanent name is not expected to be made
until the governance model is finalized.

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Key Assumptions

Question(s)

Assumption(s)

Will each member maintain rights to any information it
provides to the larger group, or will such information
become the property of the entity?

TBD via governance

How will decisions be made? Management group,
committees or majority vote all members? If majority vote
of all members, for all decision or only material decisions?

The governance model has not yet been determined

Will members be permitted to provide information shared
by other members to third parties? If so, will there by any
limitations on use?

TBD via governance

Will the organization’s Website be accessible to members
only, or will it be publicly accessible with certain
information only available to members with a password?

Any such Website would be publicly accessible with certain
information only available to members with a password

Will the organization solicit funds on behalf of its
members, and then distribute those funds to its members
based on an agreed upon formula?

No. It is not expected that the organization will be set up as a
charity. It is likely to be set up to accept grants to fund its
operation and, possibly, membership dues

Will the organization sell merchandise and/or execute
programs to help fund its operations?

TBD

1/22/2014


31


Key Assumptions

Question(s)

Assumption(s)

What is the vision for the organizational structure and
responsibility for day-to-day activities? Will the
organization/coalition be run by committees for efficiency
purposes because there are so many members and the
potential for additional members?

Although the precise details of the governance model is yet to
be determined, it is envisioned that a “steering” group of
some sort will set the goals, objectives, and deliverables with
work teams executing the deliverables

Will the organizational structure and governance change
as more members are admitted? What will the
membership criteria be? Will there be a limit on the
number of members who are admitted, and a limit on
involvement by additional members on work teams as the
total number of members increases?

The structure and governance will be set up to be enduring.
Membership criteria has not be determined at this time.
Although there is not expected to be a limit on the number of
members, this needs to be confirmed.

What is the duration of the organization/coalition? What
happens to the assets if the group decides to disband?

TBD

How often will the organization convene F2F meetings of
its membership?

1 or 2 times per year. In-person meetings are suggested to be
2 days in length: 1 day focused on the business of the coalition
(may be subset of org leadership) followed by a members
meeting focused on strategy planning, project work, and
alignment

1/22/2014


32


Key Decisions

(A)
Network / Org
Structure

(B)

(E)

Roles &
Responsibilities

Operating
Model

Staffing Plan

Summary
Section
(D)
Governance

1/22/2014

(C)
Membership /
Participant
Base


33

(A)
Network / Org
Structure


Recommended Network / Org ‘Strawman’ at a Glance
Participants/Membership Base
Dues-Paying (Year 2+ / different schedules by membership type)
Provide input into network strategy and collaboration priorities
Deliver objectives via approved Action Team projects
Exchange information, learnings, best practices

Staff
Contracted

Exec / Managing Director
Develop network strategy,
recommend prioritization of
collaboration projects (Action Teams)

Collaborating to Create a World
without Childhood Cancers

Approve funding strategy, budget, staffing
plan

Obtain grants for operating expenses

Oversee governance & membership

Assist with obtaining funding for operations

Manage staff resources

Approve governance changes and
membership strategy

Program Management
Provide project-manage support to
Membership to deliver objectives via
Action Teams

Administrative Asst
Manage clerical duties

Assist Director, PM w
projects as needed

Appointed + Volunteer / 2-year term limits

Approve network strategy and priorities

Manage budget

Implement social media strategy

Steering Group

Approve Action Teams (projects)

Action Team Collaboration Initiatives
Awareness
Family Support & Resources
Advocacy

Sponsors
Could be stratified based on years of funding commitment and/or $ amount
Provide funding for network operating expenses via unrestricted grants

1/22/2014


34

(B)


Roles &
Responsibilities

Synopsis: Key Roles & Responsibilities
RASCI: Responsible, Accountable, Supportive, Consulted, Informed
Exec /
Board / Advisors Managing Dir Program Mgt

Set strategy and priorities; manage
operating budget and resources to deliver
on goals & objectives

A

R

Bring in revenue for operating expenses;
ensure funding viability

A

Members /
Participants

R

Sponsors

C

I

Admin

I

C

C
R

Fund network operating expenses

R

Oversee governance and membership

A

R

I

I

I

I

Deliver network/org goals

A

R

C

R

I

I

I

C

A

Create, evolve, and implement network /
org social media strategy

C

A

R

C

I

Plan and implement network/org national
meetings

C

A

C

C

R

A

C

A/R

A/R

Deliver network/org objectives via
collaborative projects

Manage clerical duties for network
operations

Exchange information, learnings, best
practices

1/22/2014

A/R

R

I

As leads or
members of Action
Teams


I

R
A/R

A/R
35

(C)


Membership /
Participant
Base

Key Decisions
National recommended
at least for Years 1 & 2

C-1.

Will the membership scope be national or international?

C-2.

What type of membership / participant categories or types will be included?

C-3.

Will the organization / network collect membership / participant fees on an annual basis
C-3a.
C-3b.
revenue?

C-4.

Recommended for Year 2

If so, what targets will be set for membership/participants fees as a % of overall
TBD for Year 2

Will “founding” memberships be utilized for seed funding to fund operations in Year 1?
C-4a.

C-5.

If so, what will the fee schedule approach be?

See next slide

If so, what will the approach be?

Recommended

Will there be an individual or a team who will decide on membership / participant acceptances
Subgroup of Steering /
as well as removals from the network / organization?
Advisory

C-6.

What will be the requirements for the different membership / participant categories?

C-5a.

What will the application process be (e.g., submit a form? Financial documents?)
TBD by
permanent
governance

1/22/2014


36

(C)


Membership /
Participant
Base

Key Decisions

C-2.

TOPIC for DECEMBER
ADVISORY SESSIONS


Options include but may not be limited to:
Individual Advocate
Adult (non student)
Researcher / Scientist (non student)
Student (including children & adolescents)

Voluntary Health Agencies / Nonprofit Organizations
Emerging Nonprofits (pre- 501c3 status)
Established Nonprofits (501c3 status)
Hospitals / Integrated Health Systems
Government Agency / Association

Corporate / Allied Industry Stakeholders (e.g., pharmaceutical and medical equipment
manufacturers)

1/22/2014


37

(D)


Key Decisions

Governance
D-1.

What person and/or group is responsible for administering the governance of the network /
organization?
See Next Slide
D-1a.

Are the person and/or group appointed? Elected?

D-2b.

For each role involved in administering the governance, are term limits involved? If so,
what are they?

D-2.

Will Governance feature parity voting (i.e., each member has 1 vote of equal value) or will
voting “weight” be determined by membership category/contribution level? Suggest parity

D-3.

What are requirements for the by-laws of the network / organization?

D-4.

Besides the by-laws, to what else do prospective members / participants need to agree in order
TBD via permanent
to be members / participants (e.g., ethics)?

TBD via permanent
governance

governance

D-5.

What are the business rules governing expulsion from the network / organization?
TBD via permanent
governance

1/22/2014


38


(D)

Key Decisions

Governance
D-1.

What person and/or group is responsible for administering the governance of the network /
organization?
D-1a.

Are the person and/or group appointed? Elected (by whom?)?

D-2b.

For each role involved in administering the governance, are term limits involved? If so,
what are they?

Summary Recommendation
Exec / Managing Director role administers Governance for the entity (paid staff member)
Steering / Advisory Team
Mix of appointed and volunteer / elected: founding members offered 1 seat; remaining seats filled by each membership
category type (1 or 2 each) – suggest first Steering/Advisory team be composed of Project Collaborate Working Team + a
few others from Project Collaborate Steering Team for ease of implementation.
Term limits: Yes, 2 years
Co-Chaired: 1 founding member and 1 individual community representative
Recommend an odd number of members so as to avoid “ties” in decision-making
Volunteer appointments vs. Elections: pros/cons to be discussed

1/22/2014


39

(E)


Key Decisions

Staffing Plan
E-1.

What staff positions – if any – are required for the network / organization?

E-2.

If staff positions exist …

E-2a.
E-2b.

Where physically will they work?

E-2c.

Can they be “hosted” by an existing network member organization (i.e., the staffer
works for an existing network member organization but is dedicated 100% to the
network / organization)?

E-2d.
E-3.

Are they paid?

To whom do they report?

If staff positions are paid…
E-3a.

E-3b.

1/22/2014

Are they insourced (i.e., the staffers are employees of the network / organization),
outsourced (i.e., via association mgt company, a consulting firm, or independent
contractors)
What is their salary and benefits plan?


40

(E)


Summary Recommendations

Staffing Plan
STAFF POSITIONS
• Exec/Mng Director: 1, full-time
• Program Mngr: start w/ 1, full-time (assumption: can manage 2 Action Team projects at once plus
network social media platform; adding incremental PMs will depend on level of funding and Steering
decisions on project priorities)
• Admin Asst: 1, part-time
• Paid positions: Ensures accountability; volunteer positions introduce risk to sustainability
• Reporting Rships: Exec/Mng Director reports to Steering/Advisors; PM & Admin report to Exec/Mng Dir
STAFF SOURCING
Insource
Set Up Stand-Alone Org

Outsource
Use Assoc. Mgt. Firm

Host
Network Member(s) Host Resources

Pros
Greater control, no shared admin staff

Pros
Expertise at setting up and managing
association-type orgs & staff

Pros
Leverages infrastructure of existing orgs

Lower overhead costs (shared back-office,
admin)

Cons
Introduces risk of perceived and real
conflicts of interest

Avoids perceived / real conflicts of interest
among membership
Cons
Increased complexity at outset for setting up
new organization; likely to take longer
Increased liabilities (network as employer)
Higher costs; e.g., overhead, salary/bens

Assumed to be fastest route to set up
Cons
Perceived less control over staff; assume
shared admin staff

Complexity of managing SLAs and crosscharging for resource expenses
Strong recommendations from case study
research to avoid this model

Complexity of managing SLAs
1/22/2014


41

Project Collaborate

Financial Plan - Summary

1/22/2014


42


Financial Plan - Summary
FUNDING APPROACH
•

Network is not a grass-roots fund-raising organization

•

Suggest taking a “seed funding” approach in Year 1
• Founding memberships by organizations that
believe in the network’s mission, goals and
objectives – and are willing and able to support
the network by funding operating expenses in Q2
– Q4
• Founding members will be offered a seat on the
Steering / Advisory board (2-year term)

Funding Sources & Plan
Example – Not Benchmarked

•
•

Could utilize a “matching” incentive

100%
80%

•

1/22/2014

Grants

40%

Dues

20%

Seed Funding

0%

Year 2+: Operating expenses to be covered by grants
and membership fees
• Assume a majority of expenses covered by
unrestricted grants
•
•

Other

60%

Year Year Year Year
1
2
3
4

Organizations that fund collaborative entities
Biopharmaceutical manufacturers and medical
services companies

Favorable budget variances can go into a reserve
fund for future years or be put toward rebates to
membership fees pending Steering/Advisory
Team decision making


43


Financial Plan – Year 1 Operating Expenses
Phasing

Transition Program 20 hrs/ week; assumes GPSEG volunteer support
Lead
team
$ 20,000

$ 25,000

$

Staff

GPSEG, Alta Mgt (Assoc Mgt firm); assumes 3d
party sourcing via Assoc Mgt firm - does not
Managing / Exec Dir include benefits

$

-

$

-

$ 25,000

$ 30,000

$ 25,000

$ 30,000

$ 25,000

Staff

Salary @ ~70% of Mng/Exec Director; assumes
3d party sourcing - does not include benefits; 1
Program/Proj Mgr PM could handle 2 key projects simultaneously

$

-

$

-

$ 17,500

$ 22,500

$ 17,500

$ 22,500

$

-

$

-

$

3,900

$ 6,500

$

3,900

$

$

-

$

-

$

8,000

$ 10,000

$

-

$

-

$

-

$

300

$

450

$

Projects
Projects

Year 1 -- PR for network; build upon
kidscancerfight.org; obtain pro bono PR support;
Awareness Strategy align on facts, figures, message strategy; invest
& Tactics
in media campaigns post Year 1 pending funding $
Social Media
Web maintenance, hosting, content mgt
$

-

$
$

-

$

250

$

500

$

Projects

Database /
Repositories

Utilize social media platform (internal) in Year 1;
invest in enhanced database(s) once funding
strategy established
$

-

$

500

$

F2F Network Mtgs
Meetings (per year)
Telecon/WebEx
Services (per
Meetings month)

$100 - $150/month

Other
Professional
Expenses services

Legal filings / services, accounting services, org
set-up fees, association mgt fees. REQUIRES
MORE VALIDATION

Other
Expenses T & E

$ 20,500

$30,000

$ 75,000

$ 90,000

$ 17,500

$22,500

$ 52,500

$ 67,500

6,500

$ 3,900

$ 6,500

$ 11,700

$ 19,500

$

-

$ 8,000

$10,000

$ 16,000

$ 20,000

300

$

450

$

300

$

450

$

900

$

1,350

250

$

500

$

250

$

500

$
$

750

$
$

1,500

-

$

-

$

-

1,000

$

500

$

1,000

2,250

$

4,500

1/22/2014

$ 26,000

-

$

-

750

$ 1,500

$

$ 55,700

$ 71,450

$ 47,700


750

$

$

-

1,500

$ 61,450

$

$

-

$

Year 1
High

Low

$ 25,000

$

$

Low

$ 20,000

$250 - $500 / month

$

-

Low

Q4
High

Staff

20 hrs/ week; shared resource via Assoc Mgt
firm - no benefits

Low

Q3
High

Item

Admin Asst

Low

Q2
High

Category

Staff

Remarks / Assumptions

Q1
High

-

750

$ 1,500

$

$ 55,700

$71,450

$ 179,600

$ 230,350

44


Financial Plan – Year 1 ‘Seed’ Funding Requirements
Seed Funding Required (Q2 Q4)
Low
High
$

159,100

$

204,350

Year 1 Seed Funding Required by Each Founding Member
Low
High

Example: If 6 organizations agree to provide
“seed” funding for the network, then each
organization would contribute between ~$25K
and $35K depending on the final budget
(assuming = contributions)

# of Founding Orgs

1$

$

204,350

2$

79,550

$

102,175

3$

53,033

$

68,117

4$

39,775

$

51,088

5$

31,820

$

40,870

6$

26,517

$

34,058

7$

22,729

$

29,193

8$

1/22/2014

159,100

19,888

$

25,544

Alternatively, one or two organizations could
put in a matching grant

Should there be a threshold for seed
funding?


45

Project Collaborate

Draft Implementation Transition & Plan MACRO VIEW
Q1 2012

Q2 2012

Q3 2012

Q4 2012

Q1 2013

Establish governance
Finalize members
Draft by-laws
Kick-off monthly mtgs
Prepare network set-up
Propose, approve name /
branding
Determine legal entity type
Make legal filings
Finalize staffing plan
Goals & objectives
Validate, prioritize for Yr 1 v
Yr2
Budget and funding
Finalize Year 1 budget
Secure “Seed” Funding (Yr 1)

Funding sources
Transition grant (ALSF)

Seed Funding
Grants
Membership Dues

Legend

Key Event /
Deliverable

Tollgate / Key Decision

Dependency

LAST UPDATED: Dec 2, 2011


Key Decisions

(A)
Network / Org
Structure

(B)

(E)

Roles &
Responsibilities

Operating
Model

Staffing Plan

Detail
Section
(D)
Governance

1/22/2014

(C)
Membership /
Participant
Base


47

(A)


Key Decisions

Network / Org
Structure
A-1.

“Flat” / less traditional versus hierarchical / more traditional

A-2.

Fixed versus Variable Teams

Fixed (e.g., Membership) versus Variable (e.g., project teams)
A-3.

Will the network / organization be set up as a legal entity?
A-3a.
A-3b.

1/22/2014

If so, then what type?
If not, then what are the ramifications of this decision?


48

(A)
Network / Org
Structure
A-1.


Key Decisions

“Flat” / less traditional versus hierarchical / more traditional

Recommendation
Design and implement a relatively “flat” structure.
Seems to “fit” the culture of the childhood cancer community

Keep It Simple

1/22/2014


49

(A)


Key Decisions

Network / Org
Structure
A-2.

Fixed versus Variable Teams
Fixed (e.g., Membership) versus Variable (e.g., project teams)

Recommendation
Governance team (e.g., BoD, Steering) should be the only fixed team; otherwise, utilize variable
project teams to deliver objectives.

Keep It Simple

1/22/2014


50


(A)

Key Decisions

Network / Org
Structure
A-3.

Will the network / organization be set up as a legal entity?
A-3a.

If so, then what type?

A-3b.

If not, then what are the ramifications of this decision?

Business Requirements
Only collects revenue to fund operating expenses as approved by Governance
Options include, but are not limited to: membership dues, grants, merchandise

Majority of revenue should come from grants and other sources versus dues from members/participants
Grass-roots fund-raising to be prohibited in the by-laws
Favorable budget variances can be used to fund additional projects and/or staff or held in an investment
reserve to be applied to a future fiscal year’s budget

1/22/2014


51

(A)


Network / Org
Structure

Generally speaking….

Key Decisions
…501 c 6 orgs…

…501 c 3 orgs…
Operate for a "public benefit" purpose
defined in law (for which many membership
associations qualify)
Are eligible to receive tax-deductible
contributions from individuals

Operate for the benefit of their members
Receive the majority of their funding from duespaying members
Are not eligible to receive tax-deductible gifts

Are potentially eligible to receive foundation
and government grants

Are not likely to receive grants

Are usually exempt from paying corporate
income taxes

Are governed by a board of directors elected
from and by the membership

Are subject to most taxes paid by businesses

Are often exempt from paying property and
sales taxes
Are prohibited from publicly supporting any
particular political candidates
Are governed by a board of directors/trustees
selected from the community or by the
membership
1/22/2014


52

(A)
Network /
Org Structure
501(c)(3)


Key Decisions
501(c)(4)
No requirement (or less
stringent)
No requirement to dedicate
assets

501(c)(6)
stringent)
assets

501(c)(7)
Organizational requirement
stringent)
Assets must be dedicated to
charitable purposes
assets
Social activity must be primary;
Social activities must be
Social activity may be anything Social activity may be anything
other activities must be less
insubstantial
less than "primary"
less than "primary"
than primary
No limit on legislative activity
Legislative activity must be
No limit on legislative activity as long as it furthers the
No limit on legislative activity
insubstantial, or <20% if
as long as it furthers the
exempt purpose; legislative
as long as it furthers the
election made
exempt purpose
expenditures may limit the
exempt purpose
deductibility of dues
Absolute prohibition against
Political activity permitted, but Political activity permitted, but Political activity permitted, but
political activity
taxed
taxed
taxed
Can serve community purposes,
Can serve the business
Serves the social and recreation
Must serve public purposes
can be somewhat narrower
purposes of the members
purposes of members
than (c)(3)
Donations not deductible as
Donations not deductible as
Donations are deductible as
charitable contributions charitable contributions Donations not deductible as
charitable contributions by
businesses sometimes deduct
businesses sometimes deduct
charitable contributions
donors on their tax returns
as advertising; dues may be
as advertising
deductible as business expense
Eligible for low cost non-profit Not eligible for lowest bulk mail Not eligible for lowest bulk mail Not eligible for lowest bulk mail
bulk mailing permit
rates
rates
rates
Must take care to generate
enough public support to avoid
Not an issue under (c)(4)
classification as a private
foundation
Exempt from Federal income
tax unless the organization has tax unless the organization has tax unless the organization has
tax on income
1/22/2014
Confidential: For
unrelated business income
unrelated business income Planning Purposes Only income
unrelated business

53

(B)


Roles &
Responsibilities

Key Decisions

B-1.What are the key responsibilities needed to make the network function effectively and efficiently?
B-2. What specific roles will be needed within the network to own and manage these responsibilities?
B-3.Who is accountable and responsible for what? Who is consulted versus informed?
B-4. Language used to describe the “roles” of the network, e.g.:
•

Board of Directors / Advisory Team or Council / Steering Committee

•

Action Team / Committee / Task Force / Team / Work Pod

•

CEO / Executive Director / Managing Director / Convener

•

Program / Project Manager

•

Members / Participants

•

Sponsors / Funders

1/22/2014


54

(B)


Roles &
Responsibilities

Roles & Responsibilities
RASCI: Responsible, Accountable, Supportive, Consulted, Informed

Responsible
•Conducts work
•Owns the problem
•There should be only 1 per high level activity

Accountable
•Approves completed work
•Is fully accountable for the end result

Supportive
•Acts as a resource to Responsible role
•One or more team members
•Tasked with work (/led) by Responsible role

Consulted
•Has information /capability that may be needed
•Assistance is sought via 2-way communication
•Interaction typically with Responsible role

Informed
•Notified of results and /or progress
•Notification is via 1-way communication – NOTE: participation in meetings is not a required means to inform
•Communication typically from Responsible

55

(C)


Membership /
Participant
Base

Key Decisions

C-1.


C-2.


C-3.

C-3a.
C-3b.
revenue?

C-4.


C-4a.


C-5.


C-6.


C-5a.

1/22/2014



56

(C)


Membership /
Participant
Base

Key Decisions

C-1.

Key Variable/Consideration

National

International

Scope Manageability

More manageable

Less manageable

Complexity

Lower

Higher

Broad inclusivity

--

--

Reach of potential impact

Lower

Higher

Potential funding sources for network
operating expenses

Less

More

Recommendation
Start with a national scope at the outset (e.g., for Years 1 & 2) and consider expanding to
international membership via Governance thereafter
Establish new ways of working / collaborating and stabilize the network in the US first
Achieve concrete collaborative “wins” and prove the value-add for network members before introducing
additional complexity of managing an international network / entity
1/22/2014


57

(C)


Membership /
Participant
Base

Key Decisions

C-2.


Options include but may not be limited to:
Individual Advocate
Adult (non student)
Researcher / Scientist (non student)
Student (including children & adolescents)

Voluntary Health Agencies / Nonprofit Organizations
Emerging Nonprofits (pre- 501c3 status)
Established Nonprofits (501c3 status)
Hospitals / Integrated Health Systems
Government Agency / Association

Corporate / Allied Industry Stakeholders (e.g., pharmaceutical and medical equipment
manufacturers)

1/22/2014


58

(C)


Membership /
Participant
Base

Key Decisions

C-3.

Will the organization / network collect membership / participant fees on an annual
basis?
For

Against

Helps with funding operating expenses,
offsetting dependence on charitable grants

Could conflict with value of inclusivity unless
the fee schedule is set flexibly by membership
type

Provides an added element of “skin in the
game” for members to participate actively and
to have a financial stake in the collaborative’s
success

Recommendation
Utilize a flexible fee schedule so that inclusivity is not impacted

1/22/2014


59

(C)


Membership /
Participant
Base

Key Decisions

C-3.

C-3a.


NB: Final fee schedule and tiers / amounts to be decided by Governance.
Participant / Member Type

Fee Schedule Options

Remarks

Individual – Adult (non-student /
non-researcher / scientist)

Flat fee, benchmarked

See appendix for relevant references

Individual – Researcher / Scientist



Individual – Student



VHA / Nonprofit – Emerging


Should be set at same rate as lowest
tier of Established VHA/nonprofit

VHA / Nonprofit – Established

Graduated dues schedule as a % of operating
budget for most current fiscal year

Recommend 3 tiers / no more than 5

Hospitals / HIS



Government Agency / Assoc



Corporate / Allied Industry
Stakeholders

Graduated dues schedule as a % of gross
revenues or # of employees for most current
fiscal year


1/22/2014

60

(C)


Membership /
Participant
Base

Key Decisions

C-3.

C-3b.

revenue?

Example – Not benchmarked
yet
100%
80%
Other

60%

Grants
Dues

40%

Seed Funding
20%
0%
Year 1

1/22/2014

Year 2

Year 3

Year 4


61

(C)


Membership /
Participant
Base

Key Decisions

C-4.

C-4a.


Recommendation
Yes
NB: This will be covered in more detail in the Financial Plan (to come)

1/22/2014


62

(C)


Membership /
Participant
Base

Key Decisions

C-5.


Recommendation
This should be standing agenda item for the Governance team instead of setting up a separate
team – at least in Years 1 & 2

Keep It Simple

1/22/2014


63

(C)


Membership /
Participant
Base

Key Decisions

C-6.

C-5a.


TBD

1/22/2014


64

(D)


Governance

Governance
D-1.

What person and/or group are responsible for administering the governance of the network /
organization?
D-1a.

Are the person and/or group elected (by whom?)? Paid?

D-2b.
so,

For each role involved in administering the governance, are term limits involved? If
what are they?

D-2.

voting “weight” be determined by membership category/contribution level?

D-3.


D-4.


D-5.


1/22/2014


65

(D)


Governance

Governance
D-2.

voting “weight” be determined by membership category/contribution level?

To be discussed with Working Team & Advisors

1/22/2014


66

(D)


Governance

Governance
D-3.


D-4.


D-5.


To be discussed with Working Team & Advisors

1/22/2014


67

(E)


Staffing Plan

Staffing Plan
E-1.


E-2.


E-2a.
E-2b.


E-2c.
E-3.



E-3a.

E-3b.

1/22/2014

Are they insourced (i.e., the staffers are employees of the network / organization),
contractors)


68

(E)


Staffing Plan

Staffing Plan
E-1.


Recommendation for Years 1 & 2
Exec / Managing Director role (1, full-time)
Program Management role (start with 1, full-time / assume can manage 2 Action Team
projects plus network portal content mgt … may need to expand to 2 depending on #
projects approved by Governance)
Administrative Assistant role (1, part-time)

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69

(E)


Staffing Plan

Staffing Plan
E-1.


Exec / Managing Director role (1)
Required Characteristics / Experience

Preferred Characteristics / Experience

Ethical

Patient

Ability to engender trust

Comfortable with:
Diverse range of participants
People who don’t take orders
Non-hierarchical structure
Multiple communication modes

Familiarity with aspects of establishing new organizations and/or
business ventures
Experience with developing and/or implementing business and
marketing plans
Experience with alliance / coalition / network entities

Experience with awareness-building / PR campaign creation and
implementation

Strong track record of revenue generation and budget
management

Nonprofit experience

Effective fundamental project management skills

Familiar with children’s causes

Strong listening and communication skills (written /oral)

Aware of and sensitive to bereaved parents

Proven ability to balance planning and implementation

Able to work across time zones

Gregarious nature – ability to engage effectively with a broad
range of stakeholders

Can move back and forth adeptly between strategic and tactical
conversations, planning, and implementation

Comfort and tact with managing project “politics” and “agendas”
– but not a political person him/herself
Balance between task and person orientation

1/22/2014


70

(E)


Staffing Plan

Staffing Plan
E-1.


Program Manager (1 to start)
Required Characteristics / Experience

Preferred Characteristics / Experience

Bachelors degree

Masters degree

8+ years project management, process improvement and/or
change management experience

Certifications in project management and/or Lean/Six Sigma

Demonstrated experience organizing, motivating, and guiding
teams of high-level individuals

Strong analytical skills

Excellent presentation skills to large and small audiences

Proven ability to undertake project planning, risk
assessment, interdependency management, and risk & issue
management
Proven ability to influence, communicate and negotiate
effectively across a variety of stakeholders
Exceptional oral & written communication skills
Working knowledge of Lean Sigma / business continuous
improvement principles
Extensive experience in the design, planning and management of
projects to deliver specific business objectives
Working knowledge of planning and performance management
methods and practices
Strong facilitation skills and ability to lead workshops
1/22/2014


71

(E)


Staffing Plan

Staffing Plan
E-2.

E-2a.


E-2b.


TBD

Recommendation
No – strong recommendation against a hosting model, especially to avoid perceived and potential for real
conflicts of interest (i.e., staff being “beholden to the host”)
E-2c.


Recommendation
Staff answer to the Board / Steering mechanism

1/22/2014


72

(E)


Staffing Plan

Staffing Plan
E-3.

E-3a.

Are they in-sourced (i.e., the staffers are employees of the network / organization) or
contractors)

E-3b.


TBD

1/22/2014


73

Project Collaborate

Appendix:
Examples of Collaboration Models / Orgs

1/22/2014


74


Examples of Different Types of Collaboration Orgs & Models
Example

Model Type

Remarks

Alliance for Childhood Cancer

Professional Association /
Coalition – Membership Based
“Hosted” w/ no paid staff

“Hosted” by American Society of Clinical Oncologists; receives
shared admin support via ASCO
25+ members: patient advocate groups & professional
societies
Membership: participation-based, no fee required, must be
nat’l in scope, must submit financials; voted on at bi-annual
meeting; formal application required
Co-Chair w/ term limits
Fundraising: No

Alzheimer’s Disease
Megacommunity

Network

Network of orgs from public, private, and civic sectors driven
together to solve a compelling problem of common interest
Typically facilitated by 3rd party consultant
Not necessarily a permanent effort / entity
Key roles: Interim Advisory Council, Convener, Program
Manager, Members – at – Large
No single leader; driven by a network of interconnected
leaders

American Association of
Community Colleges

1/22/2014

Trade Association – Membership
Based w/ Insourced Staff

Governed via Board of Directors

Membership: Educational institutions, nonprofit
organizations, and individuals can be members; application
required; fees for individuals: Individual Assoc ($100);
Educational Assoc ($715); International Assoc ($1290);
Lifetime Individual ($1650)


75


Examples of Different Types of Collaboration Models
Example

Model Type

Remarks

American Assoc for Cancer
Research / Pediatric Cancer
Working Group

Coalition -- Membership Based
w/ Insourced Staff

Governed through member volunteers who serve as Offices,
Directors, Committee Members, Steering Committee (Ped
Cancer Working Group); includes AACR Foundation, which
raises $ for research.
Features 7 different membership types, with dues ranging
from free (Student) to $280 (Active); those in “emerging”
economies pay reduced rates.
PCWG: open to all members of AACR; dues assessed on
annual basis at a rate set by AACR Board of Directors
Fundraising: Yes

American Cancer Society

Franchised Chapters / Insourced
Staff

Certain % of revenue raised by licensed chapters goes to the
national organization
Fundraising: Yes

American Childhood Cancer
Organization (ACCO)

Nat’l Org w/ Local Affiliates /
Insourced Staff

Exec Dir, Program Mgr, Admin + Board of Directors
40 local affiliates
Nat’l Org develops programs, materials to local affiliates that
provide direct services to families in their communities
Fundraising: Yes (nat’l org and affiliates)

American Diabetes Association

Centralized HQ / Insourced Staff

All chapter $ revenue goes to HQ, which sets strategy and
dictates resource allocation

Autism Speaks

Independent 501-c-3 /
Insourced Staff

Created by merger of Autism Speaks, Nat’l Assoc. for Autism
Research, and Cure Autism Now

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76


Example

Model Type

Remarks

Brain Tumor Funders Collaborative

Partnership via Memorandum
of Understanding / No Staff

Composed of 8 organizations – mix of private philanthropies
and voluntary health orgs
Individuals volunteer time, taking on specific roles based on
skills and interests; proj mgt resource provided by member
orgs
Invited membership based on certain criteria (501-c-3s
funding brain tumor research nationally); 20 invited, 13
attended initial meeting, 8 signed on
Each member had equal voice irrespective of how much $
being put forth
Expected to commit $ equal to a standard grant for each org
Fundraising: No

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77


Example

Model Type

Remarks

Colorado Kids Cancer Association

All Volunteer

Co-Chaired Exec Committee members, Secretary, Treasurer,
and Committee Heads are elected (term limits)
Membership types & dues: Foundation ($100) / Individual
Advocate ($25); goes toward Web site and resource binders
(100% covered)
30-40 members function as Pediatric Task Force for the
Colorado Cancer Plan
Quarterly meetings

Greater Philadelphia Hotel
Association

Trade-Association /
Membership-Based /
Outsourced Staff

Association mgt firm operates the Association
3 membership types: Hotel, Allied (suppliers to hotel
industry), and Students; application required; fees differ based
on membership type
Services provided: Networking, fundraising, motivational
events, discount programs, training

Health Research Alliance

w/ Insourced Staff

501-c-3
Exec Dir, Program Admin, Board of Directors
Membership eligibility: non-governmental, not-for-profit
funders of peer-reviewed health research; must publish
annual report; application required; must have at least 1 staff
member actively involved in at least 1 Working Group; must
participate in database of health research awards
Graduated dues schedule based on total grants paid; dues
range from $2K - $20K

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78


Example

Model Type

Remarks

International Confederation of
Childhood Cancer Parent
Organizations

Federation

Nonprofit confederation / independent legal entity
Duration undefined
Mission: exchange & coordination of info between parent
associations and medical & scientific orgs; increase public
awareness for childhood cancer; represent member orgs on
an international level when appropriate; raise, manage, and
administer any resources or assets required to achieve aims
pursued by the confederation
Membership: 4 categories: Member Org, Member Nation,
Assoc Member, Honorary Member; dues vary by member
type
Membership fees make up 40% of all revenue
Governed by General Assembly, Exec Committee, and
Secretariat
General Assembly: composed of representatives from each
member
Exec Committee: Chairperson and Vice-Chairperson (both
must be parents of children with cancer), 5 Members at Large
(elected by General Assembly); Secretary and Treasurer (both
of which are appointed by the Exec Comm)
Revenue sources: annual membership dues, subsidies from
nat’l and internat’l agencies, donations from individuals and
private entities, any other activity approved by the
confederation

1/22/2014

Fundraising: Yes

79


Example

Model Type

Remarks

Louisiana Association of Nonprofit
Orgs (LANO)

Trade-Association /
Membership-Based / Insourced
Staff

11-person staff + Board of Directors
Membership types: General Members (org and staff member)
and Associate Members (gov’t agency, individual, corporate)
Graduated dues schedule for General Members based on
operating budget of member org; ranges from $100-$1500

Individual Associate: $150
Government Association: $350
Student: $25
Corporate: graduated based on # employees; $250-$2500
range
Leukemia & Lymphoma Society

Centralized HQ

All chapter $ revenue goes to HQ, which sets strategy and
dictates resource allocation
59 chapters in the US, 5 in Canada

Maryland Association of Nonprofit
Orgs

Trade-Association /
Membership-Based / Insourced
Staff

20-person staff + Board of Directors
Membership types: Nonprofits (w/ 501-c-3), Emerging
Nonprofits (pre- 501-c-3), and Associates
Nonprofits: graduated dues schedule based on operating
income for current year; $100 -$3000 range
Emerging Nonprofits: $100
Associate – Individual Student: $40
Associate – Affiliate: $150
Associate – Corporation, Contributor $350
Associate – Corporation, Benefactor $750
Associate – Corporation, Sustainer $1500


Example

Model Type

Remarks

National Breast Cancer Coalition

w/ Insourced Staff

Mission is to “eradicate breast cancer by focusing the
administration, U.S. Congress, research institutions and
consumer advocates on breast cancer. The Coalition informs,
trains and directs patients and others in effective advocacy
efforts
501-c-4 for lobbying; also has a 501-c-3 foundation to selffund operations and national advocacy training program
~$8 M annual budget
Composed of hundreds of organizations and thousands of
individuals
Officers (4): Pres, VP, Secretary Exec Board, Treasurer Exec
Board
Exec Committee (5): Pres, VP, + 3 from Board of Directors
(elected)
Board of Dir (23): co-chaired by rep from organization and one
individual members; 4 meetings per year
Staff (7): Pres, COO, Advocacy Training, Field Director,
Mkt/Comm, Govt Relations, Research & Quality Care
Membership: request-based fee structure for orgs: $100 for
member orgs and $500 for Board members. Individual
memberships are $35; President’s Council is $1000 (add’l
benefits)


Example

Model Type

Remarks

National Coalition for Cancer
Survivorship

w/ Insourced Staff

501-c-3 “advocates for quality cancer care for all Americans”
Governed by Exec Committee (8) and Board (5). Exec Comm
includes Chair, Gov Comm Chair, Secretary, Treasurer, Policy
Advisor and 2 members-at-large
Memberships include individuals, orgs, and corporations; has
a specific policy related to Corporate sponsors
Staff (11): Pres/CEO, Exec Asst, Dir Survivorship, Comms,
Survivorship Programs (2), Finance, Policy (2), Accountant


Example

Model Type

Remarks

National Health Council

w/ Insourced Staff

“Provides a unified voice for the millions of people with
chronic diseases and disabilities and their family caregivers”
Board of Dir (21): volunteer/elected; mix of member types
Staff (10): Pres, COO, Member Serv, Org Affairs & mtgs,
Finance, Comms & Marketing (2), Admin (2), Gov’t Affairs
Membership criteria: org must be nat’l in scope and in
operation for more than 3 years
Membership types: Patient Advocacy Orgs, Professional and
Membership Associations, Nonprofits w/ Interest in Health,
and Business & Industry, Associate Members (vendors)
Applications required, including submission of annual reports,
articles of incorporation, bylaws, tax filings
Membership fee schedules vary by membership type:
Voluntary Health Agencies: 0.000775 times total or
consolidated income -- $1300 min to $38,800 max
Prof/Member Assoc: by gross income -- $1000 min to $8400
max
Nonprofits: by annual budget -- $1300 min to $5400 max
Business & Industry: $17,600 flat
Associate: $9800 flat


Example

Model Type

Remarks

One Voice against Cancer

“Hosted” w/ No Paid Staff

Hosted/facilitated by ACS
“Pay as you can afford” approach to dues; if cannot pay, then
host a committee
Governed by 6-member Steering Committee
Work teams are set up ad hoc
Focuses on increasing federal appropriations for cancer
research and programs

Tennessee Cancer Coalition

w/ Insourced Staff

Grant funded

1/22/2014

2 Staff members (Program Mgr + staff person) funded via CDC
and TN Dept of Health grants
Membership types: Individual, Organization/agency,
Informational, Student
Governed via Exec Committee (6), Standing Committee Chairs
(8), and Resource Committee Chairs & Partners (10). Also
includes Regional Chairs (8) and Regional Coordinators (6)


84

Project Collaborate

Proj Mgt Section

1/22/2014


85


Draft Strategy Map: Goals v Objectives
Goal

Objective

Action:

Generic action

Specific action

Example:

I want to achieve success in the
field of genetic research and do
what no one has ever done.

I want to complete this thesis
on genetic research by the
end of this month.

Measure:

Goals may not be strictly
measurable or tangible.

Must be measurable and
tangible.

Time frame: Longer term

Short to medium term

Meaning:

The purpose toward which an
endeavor is directed.

Something that one's efforts
or actions are intended to
attain or accomplish;
purpose; target.

Principle:

Based on ideas
Broad plan

Specific
Measurable
Attainable
Realistic
Timely

Based on fact

Plan:

Objectives should
be SMART:

Narrow plan

Source: Compare Anything. www.diffen.com

86

Project Collaborate
Communication Plan
The communication plan is expected to be especially dynamic and updated on a weekly
basis. The most current draft is imbedded here (click on the icon to access):

Click on the FAQ document to access the most up-to-date version of Frequently Asked
Questions:

1/22/2014


87

Project Collaborate
RAIID: Risks, Actions, Issues, Interdependencies & Decisions
The RAIID log documents identified risks, actions, issues, interdependencies, and
decision points; accountability for their management; and status of such efforts. The
most current file is imbedded here (click on the file to access):

1/22/2014


88

Project Collaborate

Working Team: Agenda for 11/11/2011
Teleconference: (1 pm EST / Noon CST / 10 am PST): Please dial-in at 888-643-3083, then use Participant Code 34620423

Topic

Input

Discussion / Decision Points

Time

November Advisory Sessions

Nov Adv
Session PreRead doc

Discuss any last-minute logistics for next week’s call and the game
plan post-call

10 mins

Identify outstanding actions, issues, and risks; ensure plans in place
to address

10 mins

Emailed on
Tues 11/8
RAIID

--

Provide update on Design  Implementation transition staffing
Business Plan – Operating
Model

Slides 30-49

Stakeholder engagement

--

Review / discuss synthesis of various model types

30 mins

Review / modify key decision-point questions for each aspect of the
business plan related to the Operating Model (Slides 40 – 49),
especially Legal Considerations
Highlight recent stakeholder interactions, assign responsibility for
follow-ups as necessary.

5 mins

FYI: Inquiries from Jeff Gordon Racing, Max Cure Foundation/Samuel
Waxman Cancer Research Foundation
Pot Luck

--

What’s on your mind?

5 mins

Meeting feedback

1/22/2014


89

Project Collaborate


Topic

Input


Time

Landscape positioning

See slides 1214 and
attached Word
document
(Four Keys to
Collaboration
Success)

Discuss Working Team alignment (or lack thereof) and finalize
positioning to present to the Advisory Team

15 mins

Goals & objectives

See slides 2123

Discuss submitted goals & objectives, finalizes recommendation to
present to the Advisory Team

15 mins

November advisory sessions

Please review
entire
document

Review and finalize the following: general approach for the advisory
sessions, specific questions/discussion points to take forward, and
post-meeting activities

30 mins

Stakeholder engagement

--

Highlight recent stakeholder interactions, assign responsibility for
follow-ups as necessary.

15 mins

FYI: Inquiries from Jeff Gordon Racing, Max Cure Foundation/Samuel
Waxman Cancer Research Foundation
RAIID

--

Identify outstanding actions, issues, and risks; ensure plans in place
to address

15 mins

FYI: Design  Implementation Phase transition planning

1/22/2014


90

Project Collaborate


Topic

Input


Time

Goals & Objectives

See Slides 2124

Clarify difference between Goals and Objectives

45 mins

RAIID log –
Slide 37

Highlight outstanding risks, issues, actions, interdependencies,
decisions; ensure accountability for resolution

RAIID Management

Discuss ideas on Goals and Objectives to put forth to the Advisory
Team, including timeframe (i.e., Year 1 v Year 2 v Year 3); see Slide 24
for “thought starter” example
30 mins

RISK 1: Stakeholder engagement – discuss ongoing feedback,
opportunities to strengthen, issues to address
RISK 2: Transition plan – discuss opportunity to link in with GPSEG
Nonprofit Network and qualities desired for Transition individual(s);
agree on next steps
ACTION 20: Provide update from discussion with P Adamson regarding
any interdependency with COG Foundation plans
ACTION 24: Discuss questions for Booz Allen Hamilton team re:
Megacommunities model, plan for upcoming telecon
DECISIONS: FYI on the Decision Grid

Pot Luck

--


5 mins

Meeting feedback

1/22/2014


91

Project Collaborate


Topic

Input


Time

Design Phase Governance

Slide 14

Discuss ideas and Agree on approach / plan for November &
December Advisory Sessions; adjust charter as necessary

10 mins

Values

Slide 16

Confirm proposed Values for the network

5 mins


Slide 17

Review proposal and align on what to take forward to the Advisory
Team

15 mins

Scope of Services

Slide 18

Brainstorm what should be communicated and proposed regarding
Scope of Services for the network

15 mins

Value Proposition

Slides 19-20

Discuss ideas for the network’s value proposition; please see Slide 20
for a “thought-starter” example and specific questions

10 mins

Agree on next steps regarding the Value Proposition
Pot Luck

--


5 mins

Meeting feedback

1/22/2014


92

Project Collaborate


Topic

Input


Time

Design Phase Governance

Gov teams
attachment
(Excel)

Final Update on Working Team and Advisory Team compositions

10 mins

Agree, confirm Working Team ground rules (how we want to work
together, arrive at consensus, when to agree to disagree, etc.)

Slide 6
Problem/opportunity, mission,
vision, values

See Slides 13
& 14

Agree on what to propose to the Advisory Team and any related
questions to put forth to the Advisors

15 mins

Operating model

See Slides 1826

Review sustainability and “critical to quality” factors

20 mins

Pre-Read on
Megacommun
ities

Discuss merits and applicability (or lack thereof) of the “megacommunity” model

Communications and
stakeholder engagement

--

Discuss needs / ideas for communications and stakeholder
engagement activities

5 mins

RAIID

--

Highlight outstanding risks, issues, actions, interdependencies,
decisions; ensure accountability for resolution

5 mins

Pot Luck

--


5 mins

Align on proposed landscape positioning

Meeting feedback

1/22/2014


93

Project Collaborate


Topic

Input


Time

Risks and outstanding actions
(RAIID)

See Slides 2224

Review, modify mitigation plans for risks related to stakeholder
engagement and transition planning

15 mins

See Excel file
for Gen Distrib
List & Advisory
Team

Assign responsibility for following up with current PAC2 project leads
(will any work continue? After Action Reviews)
Finalize Advisory Team; make any necessary adjustments to the
Working Team

Mission statement

See Slide 16

Decide on proposed mission statement for the business plan

15 mins

Key assumptions for the
operating model

See Slides 1215

Finalize assumptions; highlight any that may be missing

10 mins

Legal update

--

Share key discussion points with Legal counsel

Review plans for operating model information synthesis and
recommendation
10 mins

Agree on source for obtaining pro bono Accounting services
Funding strategy

--

Discuss ideas and approaches for funding the network / association /
coalition

5 mins

Pot Luck

--


5 mins

Meeting feedback

1/22/2014


94

Project Collaborate


Topic

Input


Time

Proj Collaborate Governance
approach

See Slides 3-6

Verify charter – please read carefully! There have been changes

15 mins

Confirm roles / responsibilities of PM, Working Team, and Advisory
Team
Confirm suggested Advisory Team members and address open ?s
Endorse governance guiding principles

Key assumptions for financial
modeling and legal input

See Slides 1114

If still outstanding, assign accountability for helping to finalize

5 mins

Problem Statement, Vision,
Mission, and Values

See Slides 1517

Align on problem – opportunity statement for draft business plan

15 mins

Stakeholder management and
Communication Plan

See Slide 20

Ensure clarity, next steps for key upcoming communications

RAIID management

See Slide 24

Agree on next steps for the vision, mission, and values for the draft
business plan
15 mins

Discuss, agree on how to engage stakeholders to optimize input /
feedback / transparency
Introduce / explain RAIID management

5 mins

Highlight outstanding RAIIDs and determine accountability for
addressing
Pot Luck

--


5 mins

Document management
Meeting feedback
1/22/2014


95

Project Collaborate

Topic

Input


Time

PAC2 Meeting Follow-Up

--

Next steps and roles/responsibilities re:

10 mins

•Managing and/or closing out current projects (PAC2 business as
usual)
•Communicating specifically re: breakout session outputs – process
and timing for commencing new work

Design phase

See Slides 3-5

•How do we want to reference the PAC2-C3U “integration”?

10 mins

•Does the Working Team agree with the proposed charter for the
Design phase?
•Requested next steps for providing input into the Proj Plan
Change management approach

See Slide 6

•Align on which change management approach to employ with the
coalition

5 mins

Key stakeholders

See Slide 7

•Agree on key stakeholders who will to whom the proposed model
and business plan will be socialized for input and support

15 mins

•Discuss the merits and timing of a strategy planning session with
these individuals
Legal considerations and
financial modeling

See Slides 810

Requested next steps for revising assumptions for financial modeling
and legal input

5 mins

Decide on mechanism for obtaining legal guidance

Scope, Mission, Vision, and
Values

See Slides 1115

Determine next steps related to the aligning on mission, vision, and
values for the draft business plan

5 mins

Pot Luck

--


10 mins

Meeting feedback

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96

Focus

Example -- for
Discussion Purposes
Only
A relatively simple framework can be used to help align consensus on where the collaboration
should focus; i.e., “what we want to do”
Means of Collaboration
Partnering to build
scale, reach
Advocacy

Activate members’ local
networks per strategy
set by Alliance for
Childhood Cancer

Awareness

Own, implement a nat’l
marketing strategy for
kidscancerfight.org

Family Support

Core Areas

Coordinating activities

Setting common goals;
acting independently

Sharing knowledge,
experience
Share, promote best
practices at national
members meeting

Develop a nat’l
campaign for Childhood
Cancer Awareness
month

Set national comms and
message strategy for
childhood cancer,
provide to members

Maintain, publish a
nat’l calendar of
members’ key events
they want to share

Maintain, publish nat’l
directory of orgs
providing family
services

Fundraising


Identify key gaps and
pool resources to fund
1 larger innovative
project per year
(research-funding orgs
only)

Maintain a knowledge
mgt process/system of
research grants funded
by member orgs;
publish

Adapted from: M Brittin, P Haden. Aid agencies team up. McKinsey Q. 2003; spec ed: The Value in Organization: 13-14.

Proj collaborate design phase planning doc

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