Forum: Bioethics, Patient-Centricity & Pharma

The Forum on  Bioethics and Pharma:  What does it mean to be a purpose driven, patient-centered & ethical company and how do we benchmark progress?

May 4, 2018, New York City


About 60 people from key constituencies across healthcare will come together in one meeting place to discuss the purpose, ethics, patient-centricity and trustworthiness of healthcare innovation and the pharmaceutical sector. The room will be set up in small groups to enable both detailed and big-picture discussions on topics with a mix of stakeholders from pharmaceutical companies, payers, patients, investors, regulators, academia, health systems, ethics, and the like. Groups will rotate, so participants can meet each other and exchange ideas. After each topic session, sub-groups will share their highlights with the full group. The day will end with one big brainstorming session on what we can do together and next steps. We will aim to host this Forum annually and co-produce a report.


8:30-9:00am: Opening remarks & participant introductions (Breakfast provided)

Welcome:  Jeremy Abbate, Scientific American, Jeff Stier, EY, and Organizing Committee Members. Forum Chair:  Jennifer Miller, PhD, Founder, Bioethics International, NYU School of Medicine 


9:00-9:45am:Panel. What does it mean to be a purpose-driven company? How are other industries & investors tackling big ethics challenges?

Moderator: Jeff Stier, Strategy Executive Director, Purpose-Led Transformation,Ernst & Young. PanelistsJoe Spiegler, Former-CCO, Uber; Linda Avey, Co-Founder, 23andMe; Tensie Whelan, President, Rainforest Alliance, Lauren Compere, Boston Common Asset, Representative, Tiffany & Co* (tbd)

What can Pharma learn from other sectors/companies’ dealings with ethics challenges? What worked and what didn’t? For example, Facebook and Twitter are responding to public health concerns about social media addiction, autonomous car companies are creating ethics committees, and cleaning product companies are voluntarily disclosing 100% of their products’ ingredients and chemicals.  What role do/should investors play in shaping ethics and purpose? (30mins)


9:45am-10:30am: Groups.Patient Bills of Rights, Ethics Codes & Social Contracts: Operationalizing & evidencing ethics & trustworthiness in pharma

Introduction: Mike Rea, CEO, Idea Pharma (2-3mins)

Companies and groups are developing Patient Bills of Rights, Patient Charters, Ethics Codes, Social Contracts and other similar documents to guide and communicate industry values to patients, partners, and the public. The document names differ, and so can the content. Should/can we harmonize around one set of key commitments? If, so what should they be? Should they be measureable, binding in some way, and/or have signatories? Should we benchmark progress in meeting commitments annually? Examples of current industry ethics codes/charters along with a comparative analysis of their overlaps/differences will be provided to catalyze discussions (30mins)Summaries from groups (10mins)

 10:30-10:45: Break (Coffee & networking)

10:45-11:25am: Groups.Trial Design & R&D Paradigms: Improving trial access & drug information for patients

Introduction: Leslie Ritter, Government Relations, National MS Society (2-3mins)

What are the promises and pitfalls of current R&D paradigms and which standards would help address issues? What are best practices for catalyzing greater access to trials, more inclusivity in trial enrollment, more comparative effectiveness data, more real-world-evidence, and better drug information for patients (including pediatric and elderly populations, where appropriate)? Can we develop standards for all diseases and conditions, or must they be condition specific? We have been talking about these issues for a while, but many say there have not been clear answers or enough impact yet. Would creating standards and building them into a scorecard drive and reward innovation and improvement on some of these issues? (25mins) Summaries from groups to full Forum(10mins)


11:25-12:00pm:Groups.Benchmarking patient-centricity & patient engagement

Introduction: Eleanor Perfetto, National Health Council (2-3mins)

Patient-centricity and engaging patients as partners in drug development are the talk of the day. But, it isn’t always clear what these concepts mean and how we should engage patients. For some, it means asking patients for input on trial designs, particularly on outcome measures, or returning lay summary results to trial participants. What else does it mean? How do we enable representativeness in patient engagement and make it easy for patients to participate? Should patients be paid for input, especially if commercial value is produced; or, do payments create crippling conflicts of interest? Does patient input genuinely impact research or are we selectively speaking with patients and doing what we want anyway? Industry is making changes and much thought leadership has been developed on these topics, but now we need to harmonize, show what works/what doesn’t, create metrics, and benchmark progress. This session will craft benchmarks and identify best practices that can catalyze and track progress over time on patient-centricity and engagement (30mins)


12:00-1:00pm: Keynote & Awards Lunch (Good Pharma Scorecard Transparency Awards & Bioethics Genius Prize)


1:00-1:50pm: Everyone.Joint Brainstorming Session on Next Steps

Introduction: Darshan Kulkarni, Synchrogenix (2-3mins)and Jennifer Miller, BEI, Yale

All: The day will end with everyone coming together for a big brainstorming session on what we can do together and next steps. For example, for those interested, we can co-produce a report on key conclusions, best practices, metrics, and policy recommendations from our conversation. The report could also outline key elements to include in pharma ethics charters, patient bills of rights, social contracts, patient-engagement and the like– with corresponding metrics to track and recognize progress over time in operationalizing commitments. This Forum could become an annual event and formal collaboratory, allowing participants to continue dialoguing, creating a community to advance shared goals, and catalyzing progress year after year on operationalizing ethics and patient centricity in healthcare innovation.

 1:50pm-2:00pm: Closing Remarks:  Steven Sammut, Wharton School, and Organizing Committee

2-2:30pm: Networking Cocktails and Depart


  1. Alex Kelly, EVP, Allergan
  2. Amir Kalali, MD, Chair, CNS Summit
  3. Anne Bahr Thompson, OneSixtyFourth
  4. Antoinette Lagerwij, Ernst & Young
  5. Barbara Brooks Kimmel, CEO, Trust Across America
  6. Benjamin Rotz, Lilly
  7. Bob Wright, Head of Clinical Data Transparency, Sanofi
  8. Bray Patrick-Lake, MFS, DCRIResearch Together
  9. Briggs Morrison, CEO, Syndax
  10. Cathy Rowan, Socially Responsible Investments, Trinity Health
  11. Clifton Leaf, Editor-in-Chief, FORTUNE
  12. Cynthia Grossman, FasterCures
  13. Daisy Daeschler, Michael J. Fox Foundation
  14. Darshan Kulkarni, Synchrogenix
  15. Doug Dickerson, NC State Director, AARP
  16. Eleanor Dehoney, Research America
  17. Eleanor Perfetto, SVP, Strategic Initiatives, National Health Council
  18. Evan Greenfield, Bioethics International; Standard & Poor’s
  19. Gigi Hirsch, MD, Director, NEWDIGS, MIT
  20. Gregg Gonsalves, Yale School of Public Health
  21. Jeff Stier, Ernst & Young
  22. Jennifer Horonjeff, Savvy Coop
  23. Jennifer Miller, BEI, Yale School of Medicine
  24. Jeremy Abbate, Vice President, Scientific American
  25. Jessica Federer, HugoHEalth; ex-Chief Digital Officer, Bayer
  26. Jessica Scott, MD, GSK
  27. Joanne Waldstreicher, MD, CMO, J&J
  28. Joe Ross, Yale School of Medicine
  29. Joe Spiegler, Ex-Chief Compliance Officer, Baxter & Uber
  30. John Arnold, Laura and John Arnold Foundation
  31. Julie Holtzople, AstraZeneca
  32. Karen Mittleman, PhD, Sanofi
  33. Karla Childers, J&J
  34. Kelley Kendle, President, Synchrogenix
  35. Kristin Carman, PCORI
  36. Lauren Compere, Boston Common Asset
  37. Lauren Rogge, Ernst & Young
  38. Lawrence Cohen, PhD, CEO, Health2047
  39. Leslie Krumholz, CEO, HugoHealth
  40. Leslie Ritter, Government Relations, National MS Society
  41. Linda Avey, Co-Founder, 23andMe
  42. Lisa Goldman, Bioethics International Advisor
  43. Lisa Rosenbaum, MD, NEJM; Brigham & Women’s Hospital
  44. Lucy Rose,Former Director, FDA CDER DDMAC
  45. Maggie Beller, Russo & Partners
  46. Marc Wilenzick, Board Member, Bioethics International
  47. Martin Mendoza, PhD, Office of Minority Health, FDA
  48. Matthew Eyles, CEO, America’s Health Insurance Plans
  49. Meg Jones-Monteiro, Interfaith Center on Corporate Responsibility
  50. Michael Goodman, Baruch
  51. Michelle Witkop, National Hemophilia Foundation
  52. Mike Rea, CEO, Idea Pharma
  53. Nancy Goodman, Founder, Kids v Cancer
  54. Patrice Matchaba, MD, Head, Corporate Responsibility, Novartis
  55. Pol Vandenbroucke, MD, Chief Medical Office, Pfizer
  56. Rob Scott, CMO, AbbVie
  57. Robert Janiak, EMD Serono, Merck Group
  58. Sandra Morris, J&J
  59. Sarah Larson, Biogen
  60. Saul Helman, Managing Partner, Navigant Consulting
  61. Sharon Clarke, Chief Commercial Officer, Zensights
  62. Steven Sammut, Senior Fellow, Wharton School
  63. Tony Russo, Chairman and CEO, Russo Partners, LLC
  64. Walt Kostich, Director, National MS Society


ORGANIZING COMMITTEE: Jennifer Miller (Committee Chair, BEI, Yale) Lauren Rogge (EY), Antoinette Lagerwij (EY), Jeremy Abbate (Scientific American), Marc Wilenzick (BEI), Joe Ross (Yale Medical School), Evan Greenfield (BEI, Standard & Poor’s), Michelle Mello (Stanford Law School), Mike Rea (Idea Pharma); BEI Directors & Advisors

SPONSORS: Ernst & Young, BEI, Scientific American, Laura and John Arnold Foundation