Sanford/PPALS Patient Advocacy Certificate Training (PACT)

May 6-9, 2019

Sanford Research Institute, Sioux Falls, SD

Professional Patient Advocates in Life Sciences (PPALS), in conjunction with Sanford Research Institute, will host its 4th annual PACT course of study for health and life science professionals and leaders of patient advocacy organizations to enhance their professional development. This specially designed curriculum focuses on increasing the competencies and expertise of patient advocates in the life sciences and assisting Patient Advocacy Organizations (PAO) senior
leadership and board members to work on their governance and infrastructure skills.

New this year is the introduction of a Level 201 for both Tracks I and II. A continuation of the curriculum and discussions from Level 101, Level 201 will be offered only to individuals who have attended the initial Level 101. The 201 courses of study will take place simultaneously with the 101 courses.

This two-track two level program has been created to provide valuable training from a faculty who are recognized as experts in their respective fields of patient advocacy, drug development, scientific and medical research, communications, regulatory/compliance topics, non-profit governance and public policy.

Register for the 2019 PACT here

Definition of Tracks and Levels:

 Track I: Industry Level 101 Introduction: For individuals who work in the patient advocacy and life sciences function in the biotech/pharma or related industries. Individuals who wish to learn more about the patient advocacy function are encouraged to attend as well. Track I participants are encouraged to research, design, and implement a Capstone Project for enhanced professional development.

 Track II Patient Organizations Level 101 Introduction: For individuals in a senior management capacity or a member of the Board of Directors for a non-profit health patient advocacy organization (PAO). Also appropriate for individuals considering the formation of a PAO. Track II participants may complete a Reflection paper based on
their PACT experience.

 Track I Industry Level 201 Intermediate: New in 2019, only individuals who have taken Level 101 and work in the in the patient advocacy and life sciences area in the biotech/pharma or related industries may register for Level 201. There will be no exceptions made! A Capstone Project will be required for this level.

 Track II Patient Organization Level 201 Intermediate: New in 2019, only individuals who have taken Level 101 and are in senior management capacity or a member of the Board of Directors for a non-profit health patient advocacy organization may register for this level. There will be no exceptions made! A Reflection paper will be required for this Level.

 

Curriculum Content

 

Introduction Level 101 for Industry and Patient Organizations

General Session Course: for Tracks I and II Level 101 (Introduction)

• Sanford Research: Who We Are; What We Do; presented by David Pearce
• Drug Development: An Overview; presented by Marlene Haffner
• Introduction to CoRDS Registry; presented by Benjamin Forred
• Evolution of Patient Advocacy; presented by Jean Campbell, Jayne Gershkowitz &
  Barbara Wuebbels
• Four-Legged Table: Industry, PAO, Research and Regulatory Relationships; presented by
  Jayne Gershkowitz, Terri Klein, Barbara Wuebbels, David Pearce

Track I: Industry Introduction Courses Level 101:

• Patient Advisory Boards; presented by Jayne Gershkowitz & Barbara Wuebbels
• Building Your Patient Advocacy Function; presented by Jill Dolgin
• How to Best Approach Vendor Selection; presented by Patti Engel
• Telling Your Patient Advocacy Story; presented by Chris Smith
• Understanding Best Practices of Interacting with the Non-Profit Sector; presented by
  Jean Campbell
• What is the ROI of Patient Advocacy?
• Public Policy for Industry presented by Stephanie Fischer

Track II: Patient Advocacy Organization Introduction Courses Level (101):

• Maintaining a Viable Patient Advocacy Group: An Annual Check-up; presented by David
  LaGreca
• Introduction to Rare Disease Public Policy; presented by Diane Dorman and Meg Leal
• Reimbursement and Access to Drugs/Treatments; presented by Maria Hardin
• Communication for Patient Advocacy Organizations; presented by Frieda Hernandez
• Understanding the Pre-Clinical and Clinical Trial Process; presented by Barbara Handelin
• Working with Industry; presented by Terri Klein
• Building and Sustaining Non-Profit Relationships; presented by Meredith Grimm & Nancy
  Harris
• CoRDS Registry: For Non-Profit Organizations; presented by Austin Letchor

Intermediate Level 201 for Industry and Patient Organizations

General Session Course: for Tracks I and II Level 201 (Intermediate):

• Four Cases Studies; presented by David La Greca, Barbara Handelin & Robert Tomaino
• The Cost of Drugs; presented by Douglas Paul
• Compliance and You; presented by Patrik Florencio
• What’s It All About: Epidemiology; presented by David Lapidus
• Capstone and Reflection Projects: An Overview; presented by Robert Tomaino

Track I Industry Intermediate Courses Level (201):

• Business Ethics
• Patient Reported Outcomes
• C-Suite: Patient Advocacy; presented by Robert Metz
• International Patient Advocacy
• Patient Advocacy Round Table; presented by Robert Metz
• Expanded Access

Track II Patient Advocacy Organization Intermediate Courses Level (201):

• Strategic and Board Planning
• International Relations: Non-profit Collaborations; presented by Sandra Heibel
• Art of Collaboration with Stakeholders; presented by Barbara Wedehase
• Successful Fundraising; presented by Jean Campbell
• Social Media Challenges for PAOs; presented by Stephanie Fischer & Robert Tomaino
• Young Adults in Leadership and Board Roles; presented by Rob Long & Seth Rotberg

Distinguished Faculty for 2019 PACT

Distinguished Faculty:  The Sanford/PPALS PACT Faculty is comprised of leading and well respected individuals who have a depth of experience and expertise in life sciences, healthcare and rare diseases.

Jean Campbell, Principal, JF Campbell Consultants; Jill Dolgin, PharmD., Head of Patient Advocacy, AGTC; Diane Dorman, Consultant , Rare Disease Public Policy; Patti Engel, President, Engage Health; Stephanie Fischer, Strategic Communications Consultant; Patrik Florencio, Senior Vice President, Global Chief Compliance & Risk Officer, Amicus Therapeutics; Benjamin Forred, Translational Research Project Manager, Sanford Health; Jayne Gershkowitz, Senior Vice President & Chief Patient Advocate, Amicus Therapeutics; Meredith Grimm RN, Clinical Operations and Patient Advocacy Consultant; Marlene Haffner, MD, MPH, Principal & Founder, Orphan Solutions and Haffner Associates; Barbara Handelin, PhD, Founder & CEO, NovaKen; Maria Hardin, Senior Advisor, JF Campbell Consultants; Nancy Harris, Principal, Harris Consulting; Sandra Heibel PhD, Chief Scientific Officer, BioPharma Global, Frieda Hernandez, Vice President Business Development, Continuum Clinical; David LaGreca, Principal, David LaGreca & Associates; David Lapidus, President, LapidusData; Meg Leal, Esq., President, MWL Consulting; Austin Letcher, Senior Clinical Research Specialist, Sanford Health; Robert Long, Executive Director, Uplifting Athletes; Rob Metz, Sr. Vice President, Global Business Operations and External Affairs, Horizon Pharma; Doug Paul, Partner & Vice President, MME; David Pearce PhD, Executive Vice President, Innovation & Research, Sanford Health; Seth Rotberg, Partnerships Manager, Inspire; Chris Smith, President, SmithSolve; Robert Tomaino, Principal, Orphan Communications; Barbara Wedehase, MSW, Principal, BAW Consulting, Barbara Wuebbels RN, Board Chair & Co-Founder, Professional Patient Advocates in Life Sciences
(PPALS)

Dates:

The PACT course will be held May 6-9, 2019 in Sioux Falls, South Dakota.

• May 6, 2019: 6:00 pm: Evening Reception for all attendees at Club House Hotel and
  Suites (2320 S. Louise Avenue, Sioux Falls, SD 57106)
• May 7, 2019: 8:30 am to 4:00 pm: Levels 101 and 201, Tracks I and II at Club House
  Hotel and Suites (2320 S. Louise Avenue, Sioux Falls, SD 57106)
• May 8, 2019: 8:30 am to 5:00 pm: Levels 101 and 201, General session; Track I and II
  workshops at Sanford Research Institute (2301 E 60th Street North, Sioux Falls, SD)
• May 9, 2019: 8:30 am to 3:00 pm: Levels 101 and 201, General sessions; Track I & II
  workshops at Sanford Research Institute (2301 E 60th Street North, Sioux Falls, SD)

Transportation will be provided between the Club House Hotel and Sanford Campus for courses
held on May 8th and 9th .

Registration:

A unique element of the PACT course is that the course attendance for each level (101 and 201)
is limited to 50 participants for each level for both (Tracks I (35) and II (15) combined.
Registration is on a first-come, first-serve basis. Online registration is available through this link
through May 1st: Register now

Registration fees cover the Welcome reception, several meals during course, refreshment breaks, course
materials and shuttle service to Sanford Research Institute campus from the Club House Hotel
and Suites.

 Track I Level 101: $1,300 for individuals working in an industry patient advocacy
function or wishing to learn more about this function. This includes a PPALS annual
membership fee of $300.

 Track I Level 101 and 201: $950 for PPALS members whose membership is current.

 Track II Level 101 & 201: $250 for individuals in a senior leadership position for a non-
profit health organization (Executive Director, Senior Staff person or Board of Directors
Chair or Co-Chair).

The deadline for course registration is Wednesday May 1, 2019.

Lodging and Travel:

Hotel: We recommend reserving a room as soon as possible at the Club House Hotel and Suites, 2323 S Louise Avenue, Sioux Falls, SD 57106. Please call 1-800-CLUBINN or 1-605-361-8700 to make your room reservations. Please inform hotel that you are reserving a room to attend the Sanford/PPALS PACT course.  The deadline for room reservations is April 5, 2019. An alternative hotel (a sister property of the Club House) will be offered when the Club House room block is filled.

Room rates are $92 per night (plus tax) for Standard Q/Q; $92 per night (plus tax) for 1 Room Q/Q Suite and $122 per night (plus tax) for 2 Room King Suite. All rooms are based on 1-4 person occupancy. A complimentary deluxe continental breakfast available each morning. Shuttle bus service available for Sioux Falls Airport.

Travel: Sioux Falls is serviced by Sioux Falls Regional Airport, Joe Foss Field.

Contact Jean Campbell at 203-300-8964 or via email at jean@ppals.org for additional
information. Thank you for your interest!

Registration Page