The Forum on Bioethics and Pharma 2018

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

EY Chelsea, 218 West 18th street, 10th floor, 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 with a mix of stakeholders from pharmaceutical companies, payers, patient groups, 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.


8:15-8:30am:  Registration and breakfast

8:30-8:45am: Welcome: Jeremy Abbate, (Scientific American), Andy Rusnak, (Life Sciences, EY), Jennifer Miller

8:45-8:55am: Introductions: by all participants

8:55-9:05am: Setting the stage: Why we are here & what we hope to accomplish: Jennifer Miller (BEI; Yale)


9:05-9:45am: 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, EY.

PanelistsJoe Spiegler, Former-CCO, Uber; Linda Avey, Co-Founder, 23andMe; Tensie Whelan, Director, NYU Center for Sustainable Business; Meg Jones-Monteiro, Interfaith Center on Corporate Responsibility

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?


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 will be provided to catalyze discussions (30mins) Summaries from groups to Forum (10mins)


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

10:45-11:25am: Groups. The Ethics of Clinical Trial Design & R&D Paradigms

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 issues? (25mins) Group summaries (10mins)


11:25-12:00pm: Groups. Benchmarking Patient-centricity & Patient Engagement in Clinical Trials

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 engagement and make it easy for patients to participate? Should patients be paid for input; or, do payments create crippling conflicts of interest? 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


12:00-1:00pm: Keynote & Awards Lunch

Keynote: John Arnold (Co-Founder, the Laura and John Arnold Foundation) will speak on pharmaceutical integrity

Good Pharma Scorecard Awards for clinical trial transparency


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

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

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 & Getting Ready for our Next Meeting

Remarks: Jeremy Abbate, Jennifer Miller, Stephen Sammut (Wharton School)


2-2:30pm: Networking Coffee, Tea and Dessert and Depart



ORGANIZING COMMITTEE: Jennifer Miller (Forum Chair, BEI, Yale) Lauren Rogge (EY), Antoinette Lagerwij (EY), Jeremy Abbate (Forum MC, Scientific American), Marc Wilenzick (BEI), Joe Ross (Yale), Evan Greenfield (BEI, Standard & Poor’s), Michelle Mello (Stanford Law School), and Mike Rea (Idea Pharma). MODERATORS: Tony Russo, Lauren Rogge, Antoinette Lagerwij, Evan Greenfield, Marc Wilenzick, Lucy Rose, Lisa Goldman, Clifford Leaf (Fortune), and Steve Sammut