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Page | 1 – IPNA Strategic Plan, 2019

International Pediatric Nephrology Association

Strategic Plan

2019 - 2022


Plan Contents

I. Introduction 3

ll. Our Mission & Vision 4

lII. Strategic Map 5

IV. Our Priorities and Strategic Goals 6

V. Next Steps – Implementation and Monitoring 18

Vl. Acknowledgements 19


Introduction

Welcome to the International Pediatric Nephrology Association (IPNA) 2019-2022 Strategic Plan. IPNA

was officially founded in 1974 and since then has worked tirelessly to create a unified and collaborative

group of pediatric nephrologists around the world. Through education and the dissemination of

information, IPNA and its members have helped advance the field of pediatric nephrology from a

physiological discovery to the distinct specialty it is today. This is a record to be proud of – and on which

to build.

Currently, more than 2 million people worldwide receive treatment with dialysis or a kidney transplant to

stay alive, yet this number may only represent 10% of people who actually need treatment to l ive. When we

began this planning process in spring, 2018, our goal was to build a comprehensive plan that represented the

voice of our members who in turn represent the voice of “little kidneys everywhere”. At our planning

meeting in fall, 2018, armed with the results from 452 members and numerous phone interviews, we realized

that for us to be successful, every voice would be welcomed (even if it was difficult to hear) and no subject

would be off l imits if we were to draft a plan in full support of our mission and vision.

As you read through these pages, you will see that we are focused on 4 key areas:

1. Strengthen IPNA’s infrastructure

2. Enhance capacity of providers to care for children with kidney disease

3. Expand and diversify funding to support IPNA initiatives

4. Increase engagement of Pediatric Nephrology community

We then sent the draft plan to our members, opening the plan up to feedback from all. That feedback

reinforced that we had put our own biases aside as we read the data to ensure that the plan remained

focused on our mission and vision. This plan includes strategic indicators that will be used by Council,

our members, our donors, and others to measure our performance. We will report regularly and

transparently about how we are doing - have we been successful or not? What might need to be

changed? In this way, we will demonstrate our commitment to the kind of accountability that our

members should expect from us.

We believe this plan will help drive the positive change(s) to continue to advance the specialty that

drives our passion in all we do. We know that there are many factors that will continue to drive

unprecedented challenges and opportunities for us that we believe this bold, collaborative plan,

supports.

Pierre Cochat, M.D., France

IPNA President

Hui Kim Yap, MD, Singapore

IPNA President-elect


Our Mission and Vision – Why we do what we do

IPNA is a global, 501(c)3 nonprofit charitable organization that works to disseminate knowledge about kidney

disease in children in the areas where care is needed most. "Optimal care for all children with kidney disease" is IPNA´s vision.

Our mission is to lead the global efforts to successfully address the care for all children with

Kidney disease through advocacy, education, and training.


Strategic Map Based on the extensive feedback and hours of discussion and work, we have identified four overarching Goals, identified in the Strategic Map below. Specific strategic initiatives and recommended action items within each of these areas are detailed in the pages that follow.

Strengthen IPNA's infrastructure

Modify IPNA governance to increase transparency and improve efficacy

Revise management model to augment IPNA operations

Enhance functionality of IPNA's technology and resources

Enhance capacity of providers to care for children with kidney disease

Improve quality of educational and teaching programs

Facilitate IPNA member access to clinical and educational resources

Support local efforts for establishment and expansion of clinical infrastructure

Increase interaction with related societies

Expand and diversify funding to support IPNA initiatives

Attract external funding (USD $300,000) over the next 2 years to support educational

activities

Secure financially favorable contract (same or better) with a Journal publisher by 2020

Grow the investment portfolio by 10% by 2021

Increase engagement of the Pediatric Nephrology Community

Involve non-councilor IPNA members in IPNA activities

Expand the IPNA community to include patients/parents

Create new opportunities for Pediatric Nephrology providers to participate in IPNA

activities

Enhance communications of the PN community


Goal 1 – Strengthen IPNA’s infrastructure Strategy Tactics Responsibility Time Frame Metric

Modify IPNA’s governance to increase transparency and improve efficacy.

Ensure democratic election of IPNA council members through a transparent procedure in Regional societies

EC Venice council meeting (10/19)

Description of new procedures added to IPNA Manual of Operations and posted on website Creation of dashboard of desired Councilor characteristics/expertise

Develop procedure for need and selection of ex officio Councilors


Create tasks description for IPNA council members to include election of members based on motivation and proven experience


Develop list of operational decisions to ensure transparency in decision making that get voted on by:

EC Entire IPNA council

Entire IPNA membership

IPNA council Venice council meeting (10/19)

Transparency in selection of location of IPNA council meetings




Revise management model to augment IPNA’s operations.

Implement more frequent meetings of IPNA leadership

EC, C-IN Venice council meeting (10/19)

Increased frequency of Executive and other committee meetings Revised list of Councilor expectations Reports of committees regularly updated on the website

Regular review of Councilor expectations

Council Ongoing

Assign each Councilor specific, mission-driven tasks

IPNA council Venice council meeting (10/19)

Implement scheduled e-meetings of committees,

C-IN Venice council meeting (10/19) then quarterly

Produce and disseminate committee reports

C-IN Venice council meeting (10/19) then quarterly


Enhance functionality of IPNA’s technology and resources.

Use previous survey responses as a basis for establishing functionality of the website.

Website committee Chair

May-June 2019 Increased usage of website by committees for their work Improved functionality of website, including for fundraising Website users regularly surveyed regarding satisfaction

Consult C-IN on costing for further development of website features

Website Committee C-IN

June 2019

Engage web developer consultant to evaluate IPNA website functionality

Website Committee Chair

April 2019

Review changes recommended by web developer and make recommendations to Council

Website committee

October 2019

Implement changes to IPNA website

C-IN Early 2020


Goal 2 – Enhance capacity of providers to care for children with kidney disease Strategy Tactics Responsibility Time Frame Metric

Improve quality of educational and teaching programs.

Have standardized application forms online for programs, applicants, etc.

IPNA Fellowship Committee

By July, 2019 Standardized application forms and reports to inform the value of the educational and teaching programs and progress after completion of same Expand IPNA training programs by 25% in each 2-year period using philanthropic funding Ensure active participation of Regional and National Societies through updated processes Consistent attendance of Juniors at Master Classes

Have a standardized progress report for programs and fellows

IPNA Fellowship Committee

Ongoing

Create process and forms for fellows to complete and submit

Trainees with review by Fellowship Committee

Ongoing

Seek philanthropic support for expanding IPNA training programs to increase the number of programs in underserved areas, the number of fellows, and provide training infrastructure to the training programs in underserved areas

IPNA leadership

Ongoing

Define process to add the participation of Regional Societies in the decision process to admit new Training Centers and new Fellows

IPNA Fellowship committee with input from Regional Societies

October, 2019 (Venice Congress)

Define process to withdraw IPNA training centers license after 5 years without Fellows

IPNA Fellowship committee

October, 2019 (Venice Congress)

Define process that would allow IPNA to map the need for fellows at the country level ensuring clarity of the number of PNS and need for fellows by country

IPNA Fellowship committee with input from Regional and National Societies

By July, 2020

Create a web-course for fellows on basis of clinical research – epidemiology, statistics,

IPNA leadership

By January, 2020



academic writing, presenting and publishing scientific studies

Maintain IPNA-Regional society Master Classes for Junior IPNA members

Juniors Committee

Ongoing


Facilitate IPNA member access to clinical and educational resources.

Develop website functionality based on IT consultation or recommendations of Website Committee Chair to facilitate access to education resources (including tiered access)

Website Committee, C-IN.

July-September 2019

Increased utilization of materials on website Website users regularly surveyed regarding satisfaction

Engage chairs of each committee to provide deliverables for posting to website where such resources are lacking

All committee Chairs, C-in

July-September 2019

Communicate new functionality and access to resources to IPNA membership

Communications (newsletter) committee, C-IN

Ongoing



Support local efforts for establishment and expansion of clinical infrastructure.

Enhance sister center program through collaboration with ISN

Sister center committee

November 2019

Designation of initial IPNA-ISN sister center program At least 1 clinical or research project active by the end of the grant period Completion of goals established by the Centers in the application form within 2 years after finishing the grant period

Educational webinars – monthly via telecom/webinar including case studies, workshops and lectures

Sister centers Start of program, then ongoing (2018 – 2020)

Clinical Training of staff including medical, nursing and allied health involved in caring for children with kidney disease

Part of webinars or face to face teaching

Start of program then ongoing (2018 – 2020)

Developing and upgrading services of children and adolescent with kidney diseases

Sister centers End of each 2 years – current end 2020

Clinical Research development

Sister centers During period of program

Follow up reviews with assessments of success and challenges of program at 1 year, 2 years and 1 year post-completion of program

Sister center committee

Up to 1 year after program


Increase interactions with related societies (ISN, IPA)

Develop list of issues and schedule conference call with ISN Executive Director

IPNA leadership

October 2019 Committee established and convenes initial meeting at ASN Minutes of the conference calls to be distributed beyond IPNA leadership alone Pediatric Nephrologist on

Establish combined IPNA-ISN committee to oversee collaborations

IPNA leadership, ISN Exec Director

November 2019

Set a timeline for regular conference calls between ISN and IPNA leadership for an every two to three month time frame

IPNA leadership, ISN Exec Director

November 2019



Contact IPA leadership to introduce IPA and IPNA leadership to lead regular conference calls

IPNA leadership, IPA liaison

Spring 2020 EC meeting

every ISN regional board

Research missions of liaisons such as IPA and ISN and ensure interaction with same to determine commonalities and potential for partnerships

IPNA leadership, IPA liaison, ISN Exec Director


Create joint subcommittees of the organizations to address next steps as to potential interactions, overlaps, etc.

ISN, IPA and IPNA leadership


Keep Regional Societies abreast of the activities of the IPA, IPNA and ISN

IPNA leadership, ISN Exec Director, IPA liaison

Ongoing at all times

Goal 3 – Expand and diversify funding to support IPNA initiatives Strategy Tactics Responsibility Time Frame Metric

Attract external funding (USD 300,000) over the next 2 years to support educational activities.

Revision of fundraising materials to reflect IPNA history and identify areas of greatest need

Development committee

October 2019 Fundraising advisors identified, script for use with external contacts clarified and 2-3 new targets for funding potential identified yearly Fundraising materials distributed to potential donors

Form group of fundraising advisors with a commitment to IPNA & have fundraising experience

Development committee

October 2019

Develop list of potential corporate and private entities for distribution of packet and personal contact information.

Development Committee, Fundraising advisors

October 2019



Schedule visits to respective Listees by IPNA Ambassadors

C-IN Ongoing $75,000 ‘ask’ by Q3; $25,000 secured by Q4

Continued identification of potential targets of solicitation, i.e., industry, foundations, individuals

Development committee, Fundraising advisors

Ongoing

Convene periodic conference calls among the representatives of the committee and if need be, schedule- a meeting/retreat for brainstorming regarding development tactics.

Development committee, C-IN

In person meetings, Regional meetings annually

Major gifts Development committee

July-Dec 2019; April-September 20202

Grant submission and sponsorship

C-IN and development committee

May 2019-May 2021

$225,000 total secured from $85,000 grant submission per quarter

Individual annual giving via direct mail, social media

C-IN and development committee

August-December 2019

2019- $10,000 2020 - $15,000


Secure financially favorable contract (same or better) with a Journal Publisher by 2020.

Receive and review renewal bid from Springer

Executive committee

October 2019 Income from journal contract provides similar or better income than current contract

Solicit bids from additional journal publishers

Publication committee

December 2019

Review bids and identify best proposal

Publication Committee

Spring –Summer 2020



Make recommendation to EC/Council regarding most favorable bid

Publication Committee

Fall 2020 Council meeting

Sign contract with publisher

EC/IPNA President

December 2020


Grow the investment portfolio by 10% by 2021.

Analysis of current investment portfolio to identify strengths and weaknesses

Finance Committee, investment advisor

Twice yearly

Continued positive investment income 5% increase in equities

Obtain guidance from additional members and consultants (Henry)

Finance committee

Twice yearly

Modify portfolio to include a greater percentage of equities

Finance committee, investment advisor

January 2020

Goal 4 – Increase engagement of the Pediatric Nephrology community Strategy Tactics Responsibility Time Frame Metric

Involve non-Councilor IPNA members in IPNA activities

Develop process to solicit IPNA members to join IPNA Committees

EC Spring-Summer 2019

Each IPNA committee adds several non-Councilor members At least 100 IPNA members are involved in committees on an ongoing basis

Hold in-person meetings of expanded committees

IPNA council October 2019 (Venice congress)

Delegate specific projects to expanded committees based on strategic plan

IPNA council October 2019 (Venice congress)

Create mechanisms for expanded committees to hold virtual meetings

C-IN

December 2019

Expanded committees submit regular reports to Council

Committees Quarterly starting in January 2020


Goal 4 – Increase engagement of the Pediatric Nephrology community

Strategy Tactics Responsibility Time Frame Metric

Expand the IPNA community to include patients/parents

Expand web-based patient education material by disease Review and assess all previous material linked.

Patient education committee

Ongoing All collections are complete and posted to website, updated 2x/year Webpage counts reflecting utilization will be monitored and reported quarterly Action plan in place to reflect analyses of results

Expand web-based patient education material by region and language - through questionnaire to all IPNA membership


Survey results to be shared at Venice Congress (Council Meeting)

Create questionnaire feedback from patient families


Results presented in Venice

Regional materials received, vetted and posted on website


December, 2019

Analyze results of patient feedback and create action plan based on same


To be presented in Venice

Ongoing verification of website links and response to patient feedback


4-6 monthly

Create IPNA sponsored patient education meetings (similar to IPNA teaching courses) to be held regionally by IPNA members


Present recommendation at Venice Council Meeting



Create new opportunities for PN providers to participate in IPNA activities.

Increase number of countries participating in IPNA registry by 20 to ensure greatest number of societies and countries participating

Registry Committee

December, 2021

3 new guidelines produced with participation from at least 50 PN experts Country participation in registry to increase by 10-15 percent

Generate scientific output from IPNA Registry to at least 3 major publications, including co-authorship of at least 1 participant from each active country

Registry Committee

December, 2021

Create, distribute & implement IPNA guidelines via congresses (IPNA & regional societies), webinars, teaching courses, workshops on guidelines & registries

Best practice & standards committee

2019

Increase sponsorship of new members from developing countries by senior members by 10%

All members By 12/2020

Generate a list of most targeted people in regions needing sponsorship

Regional Secretaries

Create process for new calls for guideline development

Guideline committee

2019-2021

Develop web-based communication system for needs assessment that can be used in the face of local disasters

Members of continental societies

2019-2021



Enhance communications of the Pediatric Nephrology community.

Review survey data from IPNA Committee Chairs’ input on website design to assess current state of the build, identify issues that require modification to existing functionality, and identify any requests that have not yet been built. Generate list of issues and/or concerns from survey results in preparation for discussion with consultant

C-IN, Website Committee

June, 2019 Survey of membership will reflect an increase in satisfaction from 2018 survey including increased usage and perceived value

Consult IT professional on the following issues:

Location of website given required financial transactions may be influenced by jurisdiction of registration

Best practices for content management system selection to ensure longevity of the website

Best practices for website design to meet ISO standards for design and communication

Workflow for sustainable communication to members highlighting relevant and timely practices

Merging the existing littlekidneys.org and ipnaonline.org websites recognizing their independent audiences

IPNA Executive and C-IN, Website Committee

August, 2019



best practices for communications to the membership

Research other membership organizations or members to learn about additional options

C-IN, consultant September, 2019

Develop an approach to engage broad membership in a Communication Committee that includes dissemination of information through social media.

Website Committee, IPNA Exec, C-In, Communications Committee

October, 2019


Next Steps: Implementation, Evaluation and Monitoring

This Strategic Plan sets in place the roadmap that IPNA will follow for the next several years. We expect

that much of what we can’t predict (politics, economy, healthcare) will cause us to regularly review this

document and update it accordingly. Ongoing feedback from our members will necessitate change(s)

also.

We look to this document as an opportunity to build on our strengths and membership engagement to

deliver on our mission and vision that follows a thoughtful, inclusive approach utilizing the diverse views

of our many stakeholders and their respective ‘worlds’.

We will use the four goals outlined in these pages to provide updates to our members and other key

stakeholders. We look to our members to hold us accountable for providing measurable outcomes and

proof of our work and successes.

We hope that this plan will cause different members to become more curious about our work, seeking

out opportunities to get actively involved and join committees or take action that will help drive our

plan forward.

The best plans are dynamic, flexible tools that guide our decision-making process. The recommended

initiatives will be integrated into our daily work and shaped by our budget and finances. In the course of

implementation, new issues, challenges and ideas will emerge. We expect to make midcourse

corrections based on new knowledge and will share what we learn with our members.

While our goals are lofty given economic times, the results of implementing these goals will enable our

mission to become more real in all of the countries and for all of the pediatric nephrologists and

associated support teams with whom we work. We strive to meet current needs and the needs of future

generations of pediatric nephrologists and associated partners in order to best take care of the children

and families that need us.


Acknowledgements

IPNA would like to thank a number of individuals for their guidance and contributions in our planning process. Their efforts and energy have and will allow us to move forward to best support our members and the children and families we ultimately serve.

Strategic Planning Facilitator

Susan Newton, Development Strategies Plus

Planning Retreat Participants

Dr. Alfonso Huante Anaya

Dr. Melvin Bonilla-Felix

Dr. Joseph Flynn

Dr. Paulo Koch

Dr. Elena Levtechenko

Dr. Deborah Lewis

Dr. John Mahan

Dr. Mignon McCulloch

Dr. Bradley Warady

Dr. Hui Kim Yap

Lucie Semanská, C-IN

Lyon Executive Committee Meeting Participants

Dr. Patrick Brophy

Dr. Pierre Cochat

Dr. Kenji Ishikura

Dr. Mara Medeiros

Dr. Maury Pinsk

Dr. Franz Schaefer

Survey Participants

All were anonymous, but to the numerous members (see below) that took the time to complete and

share their thoughts, we thank you!

Planning kick-off survey – 452 members

Draft plan review survey – 72 members

To the 12 members that participated in phone interviews while the kick-off survey was taking place, also

providing us with their insights, thank you also!

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