proj collaborate design phase planning doc

Project Collaborate For the Childhood Cancer Community

Design Phase Planning DocumentVersion control: December 2, 2011

Document Author: Steven L. Pessagno

1Confidential: For Planning Purposes Only04/18/2023


Governance Approachfor the Design Phase


Project Collaborate – Design Phase

Charter

Confidential: For Planning Purposes Only 304/18/2023

Scope

Problem / Opportunity StatementThe 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.

Voice of CustomerA 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.

Key Deliverables10/7/2011: Governance plan for Design phase work

11/4/2011: Draft recommendations for business plan Exec Summary and Strategy Summary, for November Advisory Sessions

12/2/2011: Draft recommendations for business plan Mgt Summary and Financial plan, for December Advisory Sessions

01/6/2011: Transition plan from Design Phase to Implementation Phase

NB: Milestone dates likely subject to change

Project Team Structure / GovernanceSee next slide

Scope ConsiderationsIn: 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

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

TBD as project gets underway

Interdependencies

Operational PracticesMeetings• Working Team:Weekly, 1 hour Friday afternoons (ad hoc as

necessary); pre-reads by COB the preceding Wed.• Advisory Team: Schedule TBD … likely Nov & Dec; pre-reads

approximately 1 week in advanceGuiding principles• Team members to operate according to project guiding principles &

values (see slide after Project Team Structure & Governance)• 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 the meeting.


Governance

Scope

WORKING TEAMDraft Business Plan

(incl. Op Model)

ADVISORY TEAM

Input / Feedback

PROJECT MGT

Facilitation

Meeting M

gtMee

ting

Mgt


PROJECT MANAGEMENT Key Responsibilities100% dedicated to project

Project plan development / execution

Meeting mgt: Working Team, Advisory Team, ad hoc meetings

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

Synthesize inputs for Working Team for operating model and business plan development

WORKING TEAM Key ResponsibilitiesMeets weekly (1 hour) + 10 hrs/week

Develop, implement communication plan

Engage stakeholders

Develop recommendation for collaboration operating model

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

ADVISORY TEAM Key ResponsibilitiesAdvisory 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

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


Governance

Scope

WORKING TEAMDraft Business Plan

(incl. Op Model)

ADVISORY TEAM

Input / Feedback

PROJECT MGT

Facilitation

Meeting M

gtMee

ting

Mgt


PROJECT MANAGEMENTSteve Pessagno / GlaxoSmithKline “loaned executive” (July 2011 – Jan 2012)

WORKING TEAMTeam composition may change

Vickie Buenger / Individual community representativeMaureen Lilly / Children’s Cause for Cancer AdvocacyJoe McDonough / B+ FoundationSteve Pessagno / project mgtKris Rech / Individual community representativeRobyn Raphael/ Keaton Raphael Memorial FoundationLiz Scott / Alex’s Lemonade Stand Foundation

ADVISORY TEAMSee next slide

Please note that these teams are intended to be transitional, for the Design Phase only

Project Collaborate

Advisory TeamAs 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

Collaborating to Create a World without Childhood Cancers

AwarenessResearch & Treatment

Alliance for Childhood Cancer /George Dahlman, Karen McKinleyChildren’s Cause for Cancer Advocacy / Susan WeinerKids v Cancer / Nancy Goodman

Advocacy Family Support ServicesAm Children’s Cancer Org / Ruth HoffmanConKerr Cancer / Gavin KerrEvan’s Victory Foundation / Gavin LindbergEvan Dunbar Foundation / Tom DunbarChildren’s Onc Camping Assoc/ Dave SmithSuperSibs / Melanie Goldish

Alex’s Lemonade Stand Foundation / Jay ScottBear Necessities / Kathleen CaseyCOG Foundation / Peter AdamsonCookies for Cancer / Gretchen Witt (ad hoc)CureSearch / John LehrCuring Kids Cancer / Grainne OwenHyundai Hope on Wheels / Zafar BrooksI Care I Cure / Beth-Ann KrimskyIronMatt / Joanne RomanoJeff Gordon Children’s Foundation / Trish KrigerPediatric Cancer Res Foundation / Nancy CranePLGA Foundation / Amy WeinsteinQuad W Foundation / Lisa Tichenor (ad hoc)Rally Foundation / Dean CroweSolving Kids Cancer / Scott Kennedy (ad hoc)St. Baldrick’s / Kathleen RuddyTeam Connor / Joy CruseNB: Some orgs also provide family services

Community representativesJeremy BlilerAmy BucherMeg CrossetDan FeltwellKarla FlookMark Mozer

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


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



Team Operating Principles

Instructions

Tool kits

Frameworks

A few hard rules

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”

• 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

• 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

• 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

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

July Aug Sept Oct Nov Dec Jan Feb Mar Apr

Diagnosis

9/21: PAC2 Workshop

VoC (qual): C3U Members

Align on ProblemStatement to beSolved For

VoC (qual): Researchers

CCC Landscape Assessment

Collaborative models research

Decide on C3U Path Forward

Design

Business Plan DevelopmentSee next slide for more detail

ImplementationTBD per Design*

Legend Key Event / Deliverable

Tollgate / Key Decision Dependency

Project Collaborate

Project Plan MACRO VIEW

LAST UPDATED: Oct 7, 2011

Embed / Sustain

10/21: Model recommendation

Advisory Review/Input

11/11: Draft plan

Ongoing stakeholder engagement

Determine Advisory stakeholders

Finalize plan

Verify change mgt approach

Secure funding and staffing resources*

Formalize governance*

Kick-off communications

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

1/6: Draft implementation plan


Draft Business Plan


11

Project Collaborate – Design PhaseNovember Advisory Sessions: What We Plan To Cover

Confidential: For Planning Purposes Only

Executive SummaryVisionMissionValuesValue propositionScope of services

Strategy SummaryStrategy map & key deliverablesGoalsObjectives

Management SummaryOrganization structureRoles & responsibilitiesMembership base and structureGovernance planStaffing plan

Financial PlanFunding modelKey assumptionsProjected cash flowsProjected balance sheetLong-term plan

04/18/2023

For Advisory Team Input & Feedback in November

For Advisory Team Input & Feedback in December and January

“What we propose to do”

“How we propose to do it”


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.


Vision Mission Goals & Objectives for Years 1 & 2


Create a world without childhood cancers.

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.

Mission

Vision

COLLABORATION INFRASTRUCTUREEstablish and embed a national network across the childhood cancer community to facilitate coordinated action and collaboration where agreed

AWARENESSElevate childhood cancer awareness nationwide

RESEARCH & TREATMENTOptimize research efforts of network organizations to amplify the impact of funds raised where appropriate and agreed

FAMILY SUPPORT & RESOURCESIncrease awareness of and collaboration among organizations providing family support & resources

ADVOCACYFacilitate integration of policy and advocacy efforts on relevant childhood cancer causes

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

E1: Support annual Advocacy Day in Washington DC

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

Goals

A

B

C

D

E

Objectives




Create a world without childhood cancers.

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.

Mission

Vision

COLLABORATION INFRASTRUCTUREEstablish and embed a national network across the childhood cancer community to facilitate coordinated action and collaboration where agreed

AWARENESSElevate childhood cancer awareness nationwide




Goals

A

B

Objectives

Please note:The goals & objectives as currently proposed should be considered foundational at this point; i.e., a good starting point.

Those who will be serving on the permanent Governance body ultimately will be responsible for finalizing the goals & objectives. Once that is done, a detailed tactical plan can be developed to achieve the goals & objectives



Confidential: For Planning Purposes Only 15




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

E1: Support annual Advocacy Day in Washington DC

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

ObjectivesMilestone: Delivery of plan by end of Q1 2012

$: Securing seed funding for Year 1 operating expenses

Possible Metrics

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 platformAwareness measurements pre- and post-campaign

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

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

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

TBD



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.



Value Proposition

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.

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.



Value PropositionThe 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.

Greater levels of more accurate awareness about childhood cancer causes

# of grass-roots advocates and volunteers

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

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

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

Tighter integration of national and grass-roots advocacy efforts

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

Relationship- and trust-building among network members / participants

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

Efficiency in leveraging, deploying existing resources w/in the network

↓ Waste in time of human resources

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

Opportunities and ease to co-fund larger research projects

Stronger capability to facilitate coordinated action across the community

More comprehensive, readily available information on the research & treatment landscape (gaps, areas of breakthrough progress, co-funding opps)

$ for member orgs Enhanced loyalty, commitment of existing donors, advocates, volunteers

2ndary Customers:Pediatric Cancer Patients, Survivors, and their Families

Primary Customers:Network Participants

“soft” benefits

Benefits that can be directly measured

Project Collaborate

Landscape Positioning


Cooperation Coordination Collaboration

Shorter-term, informal relationships

Shared information only

Separate goals, resources, and structures

Longer-term effort around a project or task

Some planning and division of roles

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

Lower intensity Higher intensity

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

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

http://www.fieldstonealliance.org/client/articles/Article-4_Key_Collab_Success.cfm

Proj Collaborate – Design PhaseLandscape Positioning

Strategic direction for CC community

Follows the direction from the community

Sets the direction for the community

Fundraising

Raises no moneyAggressively raises

money

FacilitatorPassive role

Active organizer of cc community meetings and

facilitating partnerships

External Visibility

Behind the scenesThe “voice” of CC orgs;

interacting with media and gov’t agencies frequently

0 25 50 75 100

0 25 50 75 100

0 25 50 75 100

0 25 50 75 100



FunderNo funding role at all

Funds research and/or family

assistance programs

Locally or Nationally OrientedLocal National

Portal for the CC CommunityExclusive to certain groups and/or types of CC

A "go-to" place; repository of facts /

activities; research/org directories

0 25 50 75 100

0 25 50 75 100

0 25 50 75 100

“Membership” Exclusivity v InclusivityExclusive Inclusive

0 25 50 75 100




Narrative to come



Scope of Services

Network OperationsBusiness 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

Network ServicesCross-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)

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

In Out


Operating ModelDocument Author: Steven L. Pessagno


Proj Collaborate – Design PhaseSustainability

Leadership

Participant diversity

History of collaboration

Structure

Resource diversity

Sustainability plans

Community buy-in

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

Governance challenges

Structural issues

Lack of funding for core operations

Turf battles

Leader and member turnover

Shifting priorities

Predictors of Sustainability Barriers to Sustainability


LeadershipContinuity of l’ship over time helps to facilitate sustainability

Participant diversityThe more diverse, the better

History of collaboration

StructureClear operational guidelines; program mgt policies/procedures; governance and composition of governance team (professional + grassroots mix)

Resource diversityPolitical, 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-inSource: 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

Predictors of Sustainability“Critical to Quality” factors for proposed model


Governance challengesMust clearly define responsibilities of any steering committee, esp. vis-à-vis any coalition staffWhen the steering committee overrides the rights of individual members

Structural issuesFew 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 operationsMust account for more than just project $; i.e., $ needed to convene members, hire staff, build collaborative capacity and plan for the future

Turf battlesLeader and member turnoverShifting priorities


Barriers to 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.

04/18/2023


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.

04/18/2023


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

04/18/2023


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

04/18/2023


Key Decisions


(A)Network / Org

Structure

(B)Roles &

Responsibilities

(C)Membership /

Participant Base

(D)Governance

(E)Staffing Plan Operating

ModelSummary Section


Recommended Network / Org ‘Strawman’ at a Glance


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

Manage budget

Obtain grants for operating expenses

Oversee governance & membership

Manage staff resources

StaffContracted

Approve network strategy and priorities

Approve funding strategy, budget, staffing plan

Assist with obtaining funding for operations

Approve governance changes and membership strategy

Approve Action Teams (projects)Program ManagementProvide project-manage support to Membership to deliver objectives via Action Teams

Implement social media strategy

Steering GroupAppointed + Volunteer / 2-year term limits

Administrative AsstManage clerical duties

Assist Director, PM w projects as needed

Participants/Membership BaseDues-Paying (Year 2+ / different schedules by membership type)

Provide funding for network operating expenses via unrestricted grants

SponsorsCould be stratified based on years of funding commitment and/or $ amount

Collaborating to Create a World without Childhood Cancers

Provide input into network strategy and collaboration prioritiesDeliver objectives via approved Action Team projects

Exchange information, learnings, best practices

Action Team Collaboration InitiativesAwareness

Research & TreatmentFamily Support & Resources

Advocacy

(A)Network / Org

Structure

RASCI: Responsible, Accountable, Supportive, Consulted, Informed

Board / AdvisorsExec /

Managing Dir Program MgtMembers /

Participants Admin SponsorsSet strategy and priorities; manage operating budget and resources to deliver on goals & objectives

A R I C I C

Bring in revenue for operating expenses; ensure funding viability A R

C

Fund network operating expenses R R

Oversee governance and membership A R I I I I

Deliver network/org goals A R C R I I

Deliver network/org objectives via collaborative projects

I C AR

As leads or members of Action

Teams

I

Create, evolve, and implement network / org social media strategy C A R C I

I

Plan and implement network/org national meetings C A C C R

Manage clerical duties for network operations A C R

Exchange information, learnings, best practices A/R A/R A/R A/R A/R


Synopsis: Key Roles & Responsibilities


(B)Roles &

Responsibilities


Key Decisions

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. If so, what will the fee schedule approach be?

C-3b. If so, what targets will be set for membership/participants fees as a % of overall revenue?

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

C-4a. If so, what will the approach be?

C-5. Will there be an individual or a team who will decide on membership / participant acceptances as well as removals from the network / organization?

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?)


(C)Membership /

Participant Base

National recommended at least for Years 1 & 2

See next slide

Recommended for Year 2

Recommended

Subgroup of Steering / Advisory

TBD by permanent governance

TBD for Year 2


Key Decisions



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 SystemsGovernment Agency / AssociationCorporate / Allied Industry Stakeholders (e.g., pharmaceutical and medical equipment manufacturers)

(C)Membership /

Participant Base

TOPIC for DECEMBER ADVISORY SESSIONS


Key Decisions

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?

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?

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 to be members / participants (e.g., ethics)?

D-5. What are the business rules governing expulsion from the network / organization?


(D)Governance

See Next Slide

Suggest parity

TBD via permanent governance




Key Decisions

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)Governance

Summary RecommendationExec / Managing Director role administers Governance for the entity (paid staff member)

Steering / Advisory TeamMix 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


Key Decisions

E-1. What staff positions – if any – are required for the network / organization?

E-2. If staff positions exist …

E-2a. Are they paid?

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. To whom do they report?

E-3. If staff positions are paid…

E-3a. 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)

E-3b. What is their salary and benefits plan?


(E)Staffing Plan


Summary Recommendations


(E)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 SOURCINGInsourceSet Up Stand-Alone Org

OutsourceUse Assoc. Mgt. Firm

HostNetwork Member(s) Host Resources

ProsGreater control, no shared admin staffAvoids perceived / real conflicts of interest among membership

ConsIncreased complexity at outset for setting up new organization; likely to take longerIncreased liabilities (network as employer)Higher costs; e.g., overhead, salary/bens

ProsExpertise at setting up and managing association-type orgs & staffLower overhead costs (shared back-office, admin)Assumed to be fastest route to set up

ConsPerceived less control over staff; assume shared admin staffComplexity of managing SLAs

ProsLeverages infrastructure of existing orgs

ConsIntroduces risk of perceived and real conflicts of interestComplexity of managing SLAs and cross-charging for resource expensesStrong recommendations from case study research to avoid this model


Financial Plan - Summary



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)

• Could utilize a “matching” incentive

• Year 2+: Operating expenses to be covered by grants and membership fees

• Assume a majority of expenses covered by unrestricted grants

• 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

Year 1

Year 2

Year 3

Year 4

0%

20%

40%

60%

80%

100%

OtherGrantsDuesSeed Funding

Funding Sources & PlanExample – Not Benchmarked


Financial Plan – Year 1 Operating Expenses


Phasing Q1 Q2 Q3 Q4 Year 1

Category Item Remarks / Assumptions Low High Low High Low High Low High Low High

StaffTransition Program Lead

20 hrs/ week; assumes GPSEG volunteer support team $ 20,000 $ 25,000 $ - $ - $ - $ - $ - $ - $ 20,000 $ 25,000

StaffManaging / Exec Dir

GPSEG, Alta Mgt (Assoc Mgt firm); assumes 3d party sourcing via Assoc Mgt firm - does not include benefits $ - $ - $ 25,000 $ 30,000 $ 25,000 $ 30,000 $ 25,000 $30,000 $ 75,000 $ 90,000

Staff Program/Proj Mgr

Salary @ ~70% of Mng/Exec Director; assumes 3d party sourcing - does not include benefits; 1 PM could handle 2 key projects simultaneously $ - $ - $ 17,500 $ 22,500 $ 17,500 $ 22,500 $ 17,500 $22,500 $ 52,500 $ 67,500

Staff Admin Asst20 hrs/ week; shared resource via Assoc Mgt firm - no benefits $ - $ - $ 3,900 $ 6,500 $ 3,900 $ 6,500 $ 3,900 $ 6,500 $ 11,700 $ 19,500

MeetingsF2F Network Mtgs (per year) $ - $ - $ 8,000 $ 10,000 $ - $ - $ 8,000 $10,000 $ 16,000 $ 20,000

Meetings

Telecon/WebEx Services (per month) $100 - $150/month $ - $ - $ 300 $ 450 $ 300 $ 450 $ 300 $ 450 $ 900 $ 1,350

ProjectsAwareness Strategy & Tactics

Year 1 -- PR for network; build upon kidscancerfight.org; obtain pro bono PR support; align on facts, figures, message strategy; invest in media campaigns post Year 1 pending funding $ - $ - $ - $ -

Projects Social Media Web maintenance, hosting, content mgt $ - $ - $ 250 $ 500 $ 250 $ 500 $ 250 $ 500 $ 750 $ 1,500

ProjectsDatabase / Repositories

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

Other Expenses

Professional services

Legal filings / services, accounting services, org set-up fees, association mgt fees. REQUIRES MORE VALIDATION $ 500 $ 1,000 $ 500 $ 1,000

Other Expenses T & E $250 - $500 / month $ 750 $ 1,500 $ 750 $ 1,500 $ 750 $ 1,500 $ 2,250 $ 4,500

$ 20,500 $ 26,000 $ 55,700 $ 71,450 $ 47,700 $ 61,450 $ 55,700 $71,450 $ 179,600 $ 230,350


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# of Founding Orgs

1 $ 159,100 $ 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 $ 19,888 $ 25,544

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)

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

Should there be a threshold for seed funding?

Q1 2012 Q2 2012 Q3 2012 Q4 2012 Q1 2013

Legend Key Event / Deliverable

Tollgate / Key Decision Dependency

Project Collaborate

Draft Implementation Transition & Plan MACRO VIEW

LAST UPDATED: Dec 2, 2011

Establish governanceFinalize membersDraft by-lawsKick-off monthly mtgs

Prepare network set-upPropose, approve name / brandingDetermine legal entity typeMake legal filingsFinalize staffing plan

Goals & objectivesValidate, prioritize for Yr 1 v Yr2

Budget and fundingFinalize Year 1 budgetSecure “Seed” Funding (Yr 1)

Transition grant (ALSF) Seed Funding

Grants

Membership Dues

Funding sources


Key Decisions


(A)Network / Org

Structure

(B)Roles &

Responsibilities

(C)Membership /

Participant Base

(D)Governance

(E)Staffing Plan Operating

ModelDetail

Section


Key Decisions

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. If so, then what type?

A-3b. If not, then what are the ramifications of this decision?


(A)Network / Org

Structure


Key Decisions

A-1.“Flat” / less traditional versus hierarchical / more traditional


(A)Network / Org

Structure

RecommendationDesign and implement a relatively “flat” structure.

Seems to “fit” the culture of the childhood cancer community

Keep It Simple


Key Decisions

A-2.Fixed versus Variable Teams

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


(A)Network / Org

Structure

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

Keep It Simple


Key Decisions

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?


(A)Network / Org

Structure

Business RequirementsOnly 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


Key Decisions

Operate for a "public benefit" purpose defined in law (for which many membership associations qualify)

Are eligible to receive tax-deductible contributions from individuals

Are potentially eligible to receive foundation and government grants

Are usually exempt from paying corporate income taxes

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

Operate for the benefit of their members

Receive the majority of their funding from dues-paying members

Are not eligible to receive tax-deductible gifts

Are not likely to receive grants

Are subject to most taxes paid by businesses

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

Generally speaking….

…501 c 3 orgs… …501 c 6 orgs…


(A)Network / Org

Structure


Key Decisions501(c)(3) 501(c)(4) 501(c)(6) 501(c)(7)

Organizational requirement No requirement (or less stringent)

No requirement (or less stringent)

No requirement (or less stringent)

Assets must be dedicated to charitable purposes

No requirement to dedicate assets



Social activities must be insubstantial

Social activity may be anything less than "primary"

Social activity may be anything less than "primary"

Social activity must be primary; other activities must be less than primary

Legislative activity must be insubstantial, or <20% if election made

No limit on legislative activity as long as it furthers the exempt purpose

No limit on legislative activity as long as it furthers the exempt purpose; legislative expenditures may limit the deductibility of dues

No limit on legislative activity as long as it furthers the exempt purpose

Absolute prohibition against political activity

Political activity permitted, but taxed



Must serve public purposesCan serve community purposes, can be somewhat narrower than (c)(3)

Can serve the business purposes of the members

Serves the social and recreation purposes of members

Donations are deductible as charitable contributions by donors on their tax returns

Donations not deductible as charitable contributions - businesses sometimes deduct as advertising

Donations not deductible as charitable contributions - businesses sometimes deduct as advertising; dues may be deductible as business expense

Donations not deductible as charitable contributions

Eligible for low cost non-profit bulk mailing permit

Not eligible for lowest bulk mail rates



Must take care to generate enough public support to avoid classification as a private foundation

Not an issue under (c)(4) Not an issue under (c)(6) Not an issue under (c)(7)

Exempt from Federal income tax unless the organization has unrelated business income



Exempt from Federal income tax on income


(A)Network /

Org Structure


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


(B)Roles &

Responsibilities

RASCI: Responsible, Accountable, Supportive, Consulted, Informed

55


Roles & Responsibilities

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

(B)Roles &

Responsibilities


Key Decisions





C-3b. If so, what targets will be set for membership/participants fees as a % of overall revenue?







(C)Membership /

Participant Base


Key Decisions



RecommendationStart 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 firstAchieve concrete collaborative “wins” and prove the value-add for network members before introducing additional complexity of managing an international network / entity

Key Variable/Consideration National InternationalScope 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

(C)Membership /

Participant Base


Key Decisions



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 SystemsGovernment Agency / AssociationCorporate / Allied Industry Stakeholders (e.g., pharmaceutical and medical equipment manufacturers)

(C)Membership /

Participant Base


Key Decisions


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

For AgainstHelps with funding operating expenses, offsetting dependence on charitable grants

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

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

RecommendationUtilize a flexible fee schedule so that inclusivity is not impacted

(C)Membership /

Participant Base


Key Decisions




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 Flat fee, benchmarked See appendix for relevant references

Individual – Student Flat fee, benchmarked See appendix for relevant references

VHA / Nonprofit – Emerging Flat fee, benchmarked See appendix for relevant referencesShould 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

See appendix for relevant referencesRecommend 3 tiers / no more than 5

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


Government Agency / Assoc Graduated dues schedule as a % of operating budget for most current fiscal year


Corporate / Allied Industry Stakeholders

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


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

(C)Membership /

Participant Base


Key Decisions



C-3b. If so, what targets will be set for membership/participants fees as a % of overall revenue? Example – Not benchmarked

yet

(C)Membership /

Participant Base

Year 1 Year 2 Year 3 Year 40%

20%

40%

60%

80%

100%

OtherGrantsDuesSeed Funding


Key Decisions




(C)Membership /

Participant Base

RecommendationYes

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


Key Decisions



(C)Membership /

Participant Base

RecommendationThis 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


Key Decisions




(C)Membership /

Participant Base

TBD


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)Governance


Governance



(D)Governance

To be discussed with Working Team & Advisors


Governance





(D)Governance

To be discussed with Working Team & Advisors


Staffing Plan



E-2a. Where physically will they work?

E-2b. 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-2c. To whom do they report?


E-3a. 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)



(E)Staffing Plan


Staffing Plan



(E)Staffing Plan

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)


Staffing Plan



(E)Staffing Plan

Exec / Managing Director role (1)

Required Characteristics / ExperienceEthical

Ability to engender trust

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

Strong track record of revenue generation and budget management

Effective fundamental project management skills

Strong listening and communication skills (written /oral)

Proven ability to balance planning and implementation

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

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

Balance between task and person orientation

Preferred Characteristics / ExperiencePatient

Comfortable with:Diverse range of participantsPeople who don’t take ordersNon-hierarchical structureMultiple communication modes

Experience with awareness-building / PR campaign creation and implementation

Nonprofit experience

Familiar with children’s causes

Aware of and sensitive to bereaved parents

Able to work across time zones

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


Staffing Plan



(E)Staffing Plan

Program Manager (1 to start)

Required Characteristics / ExperienceBachelors degree

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

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

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

Preferred Characteristics / ExperienceMasters degree

Certifications in project management and/or Lean/Six Sigma

Excellent presentation skills to large and small audiences

Strong analytical skills


Staffing Plan


E-2a. Where physically will they work?

E-2b. 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-2c. To whom do they report?


(E)Staffing Plan

TBD

RecommendationNo – 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”)

RecommendationStaff answer to the Board / Steering mechanism


Staffing Plan


E-3a. Are they in-sourced (i.e., the staffers are employees of the network / organization) or outsourced (i.e., via association mgt company, a consulting firm, or independent

contractors)



(E)Staffing Plan

TBD


Appendix:Examples of Collaboration Models / Orgs

Document Author: Steven L. Pessagno



Examples of Different Types of Collaboration Orgs & ModelsExample 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 ASCO25+ members: patient advocate groups & professional societiesMembership: participation-based, no fee required, must be nat’l in scope, must submit financials; voted on at bi-annual meeting; formal application requiredCo-Chair w/ term limitsFundraising: No

Alzheimer’s Disease Megacommunity

Network Network of orgs from public, private, and civic sectors driven together to solve a compelling problem of common interestTypically facilitated by 3rd party consultantNot necessarily a permanent effort / entityKey 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

Trade Association – Membership Based w/ Insourced Staff

Governed via Board of DirectorsMembership: 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)



Examples of Different Types of Collaboration ModelsExample Model Type Remarks

American Assoc for Cancer Research / Pediatric Cancer Working Group

Professional Association / 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 DirectorsFundraising: Yes

American Cancer Society Franchised Chapters / Insourced Staff

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

American Childhood Cancer Organization (ACCO)

Nat’l Org w/ Local Affiliates / Insourced Staff

Exec Dir, Program Mgr, Admin + Board of Directors40 local affiliatesNat’l Org develops programs, materials to local affiliates that provide direct services to families in their communitiesFundraising: 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




Brain Tumor Funders Collaborative Partnership via Memorandum of Understanding / No Staff

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




Colorado Kids Cancer Association Professional Association / Coalition – Membership BasedAll 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 PlanQuarterly meetings

Greater Philadelphia Hotel Association

Trade-Association / Membership-Based / Outsourced Staff

Association mgt firm operates the Association3 membership types: Hotel, Allied (suppliers to hotel industry), and Students; application required; fees differ based on membership typeServices provided: Networking, fundraising, motivational events, discount programs, training

Health Research Alliance Professional Association / Coalition -- Membership Based w/ Insourced Staff

501-c-3Exec Dir, Program Admin, Board of DirectorsMembership 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 awardsGraduated dues schedule based on total grants paid; dues range from $2K - $20K




International Confederation of Childhood Cancer Parent Organizations

Federation Nonprofit confederation / independent legal entityDuration undefinedMission: 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 confederationMembership: 4 categories: Member Org, Member Nation, Assoc Member, Honorary Member; dues vary by member typeMembership fees make up 40% of all revenueGoverned by General Assembly, Exec Committee, and SecretariatGeneral Assembly: composed of representatives from each memberExec 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 confederationFundraising: Yes




Louisiana Association of Nonprofit Orgs (LANO)

Trade-Association / Membership-Based / Insourced Staff

11-person staff + Board of DirectorsMembership 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-$1500Individual Associate: $150Government Association: $350Student: $25Corporate: graduated based on # employees; $250-$2500 range

Leukemia & Lymphoma Society Centralized HQ All chapter $ revenue goes to HQ, which sets strategy and dictates resource allocation59 chapters in the US, 5 in Canada

Maryland Association of Nonprofit Orgs

Trade-Association / Membership-Based / Insourced Staff

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



National Breast Cancer Coalition Professional Association / Coalition -- Membership Based 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 efforts501-c-4 for lobbying; also has a 501-c-3 foundation to self-fund operations and national advocacy training program~$8 M annual budgetComposed of hundreds of organizations and thousands of individualsOfficers (4): Pres, VP, Secretary Exec Board, Treasurer Exec BoardExec 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 yearStaff (7): Pres, COO, Advocacy Training, Field Director, Mkt/Comm, Govt Relations, Research & Quality CareMembership: 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)



National Coalition for Cancer Survivorship

Professional Association / Coalition -- Membership Based 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-largeMemberships include individuals, orgs, and corporations; has a specific policy related to Corporate sponsorsStaff (11): Pres/CEO, Exec Asst, Dir Survivorship, Comms, Survivorship Programs (2), Finance, Policy (2), Accountant



National Health Council Professional Association / Coalition -- Membership Based 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 typesStaff (10): Pres, COO, Member Serv, Org Affairs & mtgs, Finance, Comms & Marketing (2), Admin (2), Gov’t AffairsMembership criteria: org must be nat’l in scope and in operation for more than 3 yearsMembership 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 filingsMembership fee schedules vary by membership type:Voluntary Health Agencies: 0.000775 times total or consolidated income -- $1300 min to $38,800 maxProf/Member Assoc: by gross income -- $1000 min to $8400 maxNonprofits: by annual budget -- $1300 min to $5400 maxBusiness & Industry: $17,600 flatAssociate: $9800 flat



One Voice against Cancer Professional Association / Coalition – Membership Based“Hosted” w/ No Paid Staff

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

Tennessee Cancer Coalition Professional Association / Coalition – Membership Basedw/ Insourced Staff

Grant funded

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



Proj Mgt SectionDocument Author: Steven L. Pessagno



Goal ObjectiveAction: 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 Based on factPlan: Broad plan Narrow plan


Draft Strategy Map: Goals v Objectives

Source: Compare Anything. www.diffen.com

Objectives should be SMART:

Specific

Measurable

Attainable

Realistic

Timely

87

Project CollaborateCommunication Plan

Confidential: For Planning Purposes Only04/18/2023

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:

Proj Collaborate _ Comms Plan

Proj Collaborate _ FAQ

88

Project CollaborateRAIID: Risks, Actions, Issues, Interdependencies & Decisions

Confidential: For Planning Purposes Only04/18/2023

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):

Proj Collaborate _ RAIID

Project Collaborate

Working Team: Agenda for 11/11/2011


Topic Input Discussion / Decision Points TimeNovember Advisory Sessions Nov Adv

Session Pre-Read doc

Emailed on Tues 11/8

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

10 mins

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

Provide update on Design Implementation transition staffing

10 mins

Business Plan – Operating Model

Slides 30-49 Review / discuss synthesis of various model typesReview / modify key decision-point questions for each aspect of the business plan related to the Operating Model (Slides 40 – 49), especially Legal Considerations

30 mins

Stakeholder engagement -- Highlight recent stakeholder interactions, assign responsibility for follow-ups as necessary.FYI: Inquiries from Jeff Gordon Racing, Max Cure Foundation/Samuel Waxman Cancer Research Foundation

5 mins

Pot Luck -- What’s on your mind?Meeting feedback

5 mins

04/18/2023

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

Project Collaborate



Topic Input Discussion / Decision Points TimeLandscape positioning See slides 12-

14 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 21-23

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

15 mins

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

FYI: Design Implementation Phase transition planning

15 mins

04/18/2023


Project Collaborate



Topic Input Discussion / Decision Points TimeGoals & Objectives See Slides 21-

24Clarify difference between Goals and ObjectivesDiscuss 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

45 mins

RAIID Management RAIID log – Slide 37

Highlight outstanding risks, issues, actions, interdependencies, decisions; ensure accountability for resolutionRISK 1: Stakeholder engagement – discuss ongoing feedback, opportunities to strengthen, issues to addressRISK 2: Transition plan – discuss opportunity to link in with GPSEG Nonprofit Network and qualities desired for Transition individual(s); agree on next stepsACTION 20: Provide update from discussion with P Adamson regarding any interdependency with COG Foundation plansACTION 24: Discuss questions for Booz Allen Hamilton team re: Megacommunities model, plan for upcoming telecon DECISIONS: FYI on the Decision Grid

30 mins


5 mins

04/18/2023


Project Collaborate



Topic Input Discussion / Decision Points TimeDesign Phase Governance Slide 14 Discuss ideas and Agree on approach / plan for November &

December Advisory Sessions; adjust charter as necessary10 mins

Values Slide 16 Confirm proposed Values for the network 5 mins

Landscape Positioning 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 questionsAgree on next steps regarding the Value Proposition

10 mins


5 mins

04/18/2023


Project Collaborate



Topic Input Discussion / Decision Points TimeDesign Phase Governance Gov teams

attachment (Excel)

Slide 6

Final Update on Working Team and Advisory Team compositionsAgree, confirm Working Team ground rules (how we want to work together, arrive at consensus, when to agree to disagree, etc.)

10 mins

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 18-26

Pre-Read on Megacommunities

Review sustainability and “critical to quality” factorsAlign on proposed landscape positioningDiscuss merits and applicability (or lack thereof) of the “mega-community” model

20 mins

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


5 mins

04/18/2023


Project Collaborate



Topic Input Discussion / Decision Points TimeRisks and outstanding actions (RAIID)

See Slides 22-24

See Excel file for Gen Distrib List & Advisory Team

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

15 mins

Mission statement See Slide 16 Decide on proposed mission statement for the business plan 15 mins

Key assumptions for the operating model

See Slides 12-15

Finalize assumptions; highlight any that may be missingReview plans for operating model information synthesis and recommendation

10 mins

Legal update -- Share key discussion points with Legal counselAgree on source for obtaining pro bono Accounting services

10 mins

Funding strategy -- Discuss ideas and approaches for funding the network / association / coalition

5 mins


5 mins

04/18/2023


Project Collaborate



Topic Input Discussion / Decision Points TimeProj Collaborate Governance approach

See Slides 3-6 Verify charter – please read carefully! There have been changesConfirm roles / responsibilities of PM, Working Team, and Advisory TeamConfirm suggested Advisory Team members and address open ?sEndorse governance guiding principles

15 mins

Key assumptions for financial modeling and legal input

See Slides 11-14

If still outstanding, assign accountability for helping to finalize 5 mins

Problem Statement, Vision, Mission, and Values

See Slides 15-17

Align on problem – opportunity statement for draft business planAgree on next steps for the vision, mission, and values for the draft business plan

15 mins

Stakeholder management and Communication Plan

See Slide 20 Ensure clarity, next steps for key upcoming communicationsDiscuss, agree on how to engage stakeholders to optimize input / feedback / transparency

15 mins

RAIID management See Slide 24 Introduce / explain RAIID managementHighlight outstanding RAIIDs and determine accountability for addressing

5 mins

Pot Luck -- What’s on your mind?Document managementMeeting feedback

5 mins

04/18/2023


Project Collaborate



Topic Input Discussion / Decision Points TimePAC2 Meeting Follow-Up -- Next steps and roles/responsibilities re:

•Managing and/or closing out current projects (PAC2 business as usual)

•Communicating specifically re: breakout session outputs – process and timing for commencing new work

10 mins

Design phase See Slides 3-5 •How do we want to reference the PAC2-C3U “integration”?

•Does the Working Team agree with the proposed charter for the Design phase?

•Requested next steps for providing input into the Proj Plan

10 mins

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

•Discuss the merits and timing of a strategy planning session with these individuals

15 mins

Legal considerations and financial modeling

See Slides 8-10

Requested next steps for revising assumptions for financial modeling and legal inputDecide on mechanism for obtaining legal guidance

5 mins

Scope, Mission, Vision, and Values

See Slides 11-15

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

5 mins


10 mins

04/18/2023

Proj Collaborate – Design PhaseFocus

A relatively simple framework can be used to help align consensus on where the collaboration should focus; i.e., “what we want to do”

Partnering to build scale, reach Coordinating activities

Setting common goals; acting independently

Sharing knowledge, experience

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

Share, promote best practices at national members meeting

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

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

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

Fundraising

Research & Treatment 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

Means of Collaboration

Core

Are

as

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

Example -- for Discussion Purposes Only

proj collaborate design phase planning doc

Business

childhood cancer advocacy

childhood cancer specific

childhood cancer causes

childhood cancers

advisory team

governance plan

team members

transition plan