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Certification Training

Patient Advocacy Certificate Training (PACT)

Overview:

Professional Patient Advocates in Life Sciences (PPALS), in conjunction with Sanford Research Institute, created the Patient Advocacy Certificate Training (PACT) course of study for health and life science professionals and leaders of patient advocacy organizations (PAO) 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 PAO senior leadership and board members to work on their governance and infrastructure skills.

This two-track 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.

Track I (Industry) Level 101: For individuals who work in the patient advocacy and life sciences area in the biotech/pharma or closely related industries such as Communication and Clinical Research Organizations (CROs). Individuals who wish to make a career move into the patient advocacy function are encouraged to attend as well. Following the course, Track I participants are encouraged to research, design, and implement a Capstone Project based on their professional development.

Track I (Industry) Level 201: The Intermediate Level continues the patient advocacy conversation through case studies and lectures on current and relevant topics. This level is available only to individuals who have attended the Introductory Industry track.

Track II (PAO) Level 101: For individuals in a senior leadership role or a member of the Board of Directors for a non-profit patient advocacy organization. Following the course, Track II participants may complete a Reflection paper based on their PACT experience.

Track II (PAO) Level 201: Continues the conversation with senior leadership and board members about organization management and understanding industry practices through case studies and lectures. This level is available only to individuals who have attended the Introductory PAO trackes.

Curriculum Content

The PACT course offers several general session lectures created for each Track and Level. Since PACT takes place on the Sanford Research campus, it is fitting to start Day One with an introduction to Sanford Research and its position in the research world. PACT then kicks off with a Case Study for all attendees to roll up their sleeves and get to know one another while setting the tone for the rest of the course. The Overview of Patient Advocacy also brings all PACT attendees together as a way to show how this important function came into being and is a vital function within a life sciences company.  

General Session Courses: for Tracks I & II

The Introductory Track General Sessions for Industry and PAOs include:

  • Drug Development
  • Four Legged Table: Industry, PAO, Academia, and Government
  • Introduction to CoRDS Registry
  • Common Ground: Where the Patient Advocacy Function and the Patient Community Meet

The Intermediate Track General Sessions for Industry and PAOs include:

  • The Cost of Drugs
  • Epidemiology: An Overview
  • Ethical Issues in Expanded Access and Compassionate Use in Patient Advocacy
  • Common Ground: Where the Patient Advocacy Function and the Patient Communitynity

Track I Courses:

Building Your Patient Advocacy Function (Lectures 1 & 2): This 2 part lecture identifies the steps needed to build a viable patient advocacy function by discussing these important topics company goals, roles and responsibilities, overall plan, garnering internal support and more.

Understanding the Best Practices and Challenges of Interacting with the Non-Profit Sector: Lecture reviews the important aspects of how to interact ethically and responsibly with non-profit organizations.

Telling Your Patient Advocacy Story: This lecture discusses the best practices involved with how to develop a responsible and effective patient advocacy communication plan.

The Four-Legged Table Relationship between Industry, Academia, Patient Groups & Regulatory Agencies: This course explains the relationship needed between patients, industry, academia and regulatory agencies to move drug development programs forward as well as how to identify key goals each group must achieve to be successful in getting a seat at the table.

Public Policy: What is the Role of Industry in Public Policy? Lecture addresses how the Patient Advocacy function can interact with and engage with their public policy colleagues.

Patient Advisory Boards: Guidance provided on what they are, what is their function and best practices on establishing them.

The ROI of Patient Advocacy: An important discussion regarding the ever present topic of Patient Advocacy’s Return on Investment for a company.

How to Best Approach Vendor Selection: Best practices on how to evaluate, hire and manage third party vendors to assist with various internal and external patient advocacy projects and programs.

Track II Courses:

Communication for Patient Advocacy Organizations: Common sense approaches to developing a solid plan for communicating with the patient community.

Maintaining a Patient Advocacy Organization: An Annual Check-up: Discussion of governance and board best practices needed to manage a responsible and effective patient advocacy organization.

Introduction to Rare Disease Public Policy: Providing an understanding of how a Patient Advocacy Organization can participate in legislative matters and encourage its community to do so. Offers an explanation of the alphabet soup of government acronyms and important health legislation.

Working with Industry: Discover the best practices of how to engage in an appropriate and transparent relationship with companies.

Reimbursement and Access to Drugs: Receive a better understanding of how individuals can utilize Patient Assistance Programs, Medicare and Medicaid programs to improve their ability to get and afford medications.

Understanding the Clinical Trial Process: Provide PAOs the tools to share with their respective communities what is involved with a clinical trial and the importance of considering to be a participant.

Public Policy on State and Local Levels: Gain the understanding of the importance of building state and local legislative relationships.

CoRDS Registry for PAOs: Discover the nuts and bolts along with the value of bringing a CoRDs registry to your patient community.

Building and Sustaining Non-Profit Relationships: Understanding the need to foster and keep ties with individuals, community, healthcare professionals and other entities that can enhance the mission and vision of a non-profit.

PACT’s Distinguished Faculty (2025):
Our faculty is comprised of well-respected and recognized individuals who are considered experts in their respective fields. They bring a wealth of knowledge to each of their lectures based on their experiences and fortes. Our faculty may vary from year to year depending on their availability however the content of these lectures remains constant.
Katie Burns
Vice President
Smithsolve
Jean Campbell
Principal
JF Campbell Consultants
Co-Founder PPALS
Gissoo Decotiis MBF
Head of Global Advocacy Oncology
Daiichi Sankyo
David Eckstein, Ph. D
Program Director for Strategic Partnership Development
NIH
Dakota Fisher-Vance
Global Patient Advocacy Associate Director
Bio-Cryst Pharmaceuticals
Patti Engel RN,BSN
President and CEO
Engage Health
Patrik Florencio
Senior Vice President, Global Chief Compliance & Risk Officer
Amicus Therapeutics
Jayne C. Gershkowitz
Chief Patient Advocate
Amicus Therapetics
Co-Founder PPALS
Polly Gill
Associate Research Project Manager CoRDS
Sanford Research
Meredith Grimm R.N.
Consultant
ESH Sciences, Inc.
Maria T. Hardin
Senior Advisor
JF Campbell Consultants
PPALS Faculty Administrator
Nancy Harris
Principal
Harris Consulting
Sandra Heibel, PH. D
Chief of Science & Regulatory Affairs
Haffner Associates LLC
Jennifer Helfer, Ph.D
Senior Director, Patient Advocacy & Engagement, Corporate Affairs
Viridian Therapeutics, Inc.
David LaGreca, MBA
Principal
David LaGreca & Associates
David Lapidus
President
LapidusData, Inc
Robert Long
Executive Director
Uplifting Athletes
Austin R. Letcher
Program and Operations Director
Engage Health
Terri Klein
President and CEO
National MPS Society
Michele McCourt
Executive Director
CancerCare Co-Payment Assistance Foundation
Baillie McGowan, MPH
Associate Director of Policy and Research
Everylife Foundation
Douglas Paul, PharmaD
Vice President of Commercial
Spine BioPharma
Oliva Montano
Senior Director, Program Management
PROS Foundation
Alyssa Mendel
Clinical Research Specialist CoRDS
Sanford Research
Michele Rhee
Global Advocacy Relations & Patient Engagement
Savara, Inc.
Nita Patel
Executive Director,
Christopher Smith
President
SmithSolve, LLC
Michelle Slattery
Partner
Slattery Health Communications, LLC
Robert Tomaino
Prinicpal
Orphan Communications
Jill Weimer, Ph.D.
Chief Science Officer
Amicus Therapeutics

Barbara Wuebbels
Co-Founder and Board Chair of PPALS
Vice President of Battens Disease Support & Research Association

Capstone Projects and Reflection Papers:

During the PACT course, participants in the Introductory Track I will be paired with a mentor, to be selected from the faculty who are teaching the workshops. It is recommended that participants and mentors  determine a topic for completion of the project. After the conference, the mentor will guide, support and assist the participant in researching, implementing and writing about his/her Capstone Project.

The Capstone Project is based on a real-life problem or issue related to the participant’s professional work in Patient Advocacy and should provide application of skills and knowledge learned in the PPALS PACT course as a foundation.

It is important to realize that the PPALS/Sanford collaboration is not a traditional conference, but a course of study that ultimately leads to certification of the PPALS curriculum. Based on how PACT is structured and presented, participants should view the PPALS/Sanford PACT as being an ongoing curriculum that continues even after leaving Sioux Falls.

Participants enrolled in the Introductory Track I Level 101 for Industry will be encouraged to complete a Capstone project while participants in the Introductory Track II Level 101 for Patient Advocacy Organizations (PAOs) will be encouraged to complete a Reflection Paper.

Participants of Tracks I and II, Level 201 (Intermediate) are encouraged to submit a Case Study for possible use in a future PACT.

While a Capstone project, Reflection Paper, or Case Study are not required for completion of the course, participation in this aspect of the curriculum bestows a certification.

More information on Capstone Projects and Reflection papers

2025 Sanford/PPALS Patient Advocacy Certificate Training (PACT) Information:

The 2025 Sanford/PPALS PACT will be held May 5th to 8th, in Sioux Falls, SD on the Sanford Research Institute’s campus. This is a one-of-a-kind opportunity to learn about the life sciences patient advocacy function which resides within the pharmaceutical and biotech industries as well as within closely affiliated life science entities.  For individuals leading patient advocacy organizations (PAOs), PACT provides lectures on organization infrastructure and governance.

PACT is comprised of two Tracks, one for Industry and the other for Patient Advocacy Organizations (PAO) and two levels, Introductory and Intermediate. The Intermediate level for both Tracks is available only to individuals who have already attended the PACT Introductory level course. Seating is limited for each Track and Level to insure an intimate and educational conducive environment.

The May 5, 2025 evening event will be held at the ClubHouse Hotel and Suites, Sioux Falls, SD.   The full PACT course, May 6 through 8, 2025, will be held on the Sanford Research Institute’s campus, in Sioux Falls, SD. A complimentary shuttle bus will be provided to transport attendees from the Clubhouse Hotel and Suites hotel to the Sanford Campus in the morning, and back from the campus at the end of the day.

Introductory Level: Available to individuals who are new to the PACT course:

  • Industry Introductory Track I (40 seats) provide individuals who work in a patient advocacy function within a company the opportunity to expand their knowledge on pertinent topics while enhancing their professional development. It also serves as an introduction for individuals who are considering a move into this unique and important career.
  • Patient Advocacy Organization (PAO) Introductory Track II (20 seats) Offers a varied and thorough series of courses to provide senior leadership and board members of PAOs enhanced insight and skills regarding institutional growth and development.

Intermediate Level: Available only to individuals who have attended the Introductory Industry or PAO tracks (no exceptions):

  • Industry Intermediate Track I (40 seats) The Intermediate Level continues the patient advocacy conversation through case studies and lectures on current and relevant topics.
  • (PAO) Intermediate Track II (20 seats) continues the conversation with senior leadership and board members about organization management and understanding industry practices through case studies and lectures.

Basic Schedule:

Monday May 5, 2025                   Welcome reception 6:00 pm (ClubHouse Hotel and Suites)

Tuesday May 6, 2025                   Day 1 8:00am to 5:30 pm (Sanford campus)

Wednesday May 7, 2025             Day 2 8:00 am to 5:00 pm (Sanford campus)

Thursday May 8, 2025                 Day 3 8:00 am to 3:00 pm (Sanford campus)

The Registration fee includes educational materials, daily shuttle bus from the ClubHouse Hotel and Suites to the Sanford campus, welcome reception, 1 group dinner, 3 lunches and 6 refreshment breaks

The PPALS/Sanford PACT is supported by the registration fees as there are no sponsors or exhibitors in attendance

PPALS members enjoy a significant discount on the Industry Track PACT courses. If you are not a current member you can join PPALS here before registering. Registration for the 2025 PACT course is now open.

Track I

Industry Introductory:

  • Member $1275
  • Non-Member $1800

Industry Intermediate:

  • Member $1275
  • Non-Member $1800

Track II

Patient Advocacy Organization Introductory:

  • $400

 

Patient Advocacy Organization Intermediate:

  • $400

Lodging and Travel:
Hotel: We recommend reserving a room at the Club House Hotel and Suites, 2320 S Louise Avenue, Sioux Falls, SD 57106. Please call 1-800-CLUBINN; or 1-605-361-8700 to make your room reservations. Please inform the hotel that you are reserving a room to attend the PPALS/Sanford PACT course. To receive the discounted rate, please make your reservation no later than Monday, April 7, 2025.

Travel: Sioux Falls is serviced by Sioux Falls Regional Airport, Joe Foss Field. There is a complimentary hotel shuttle provided by the ClubHouse Hotel and Suites.

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