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Interactions with Patient Organizations

Statement on Interactions with Patient Organizations

Background

In recent years, the role of the patient in the healthcare system has changed rapidly– from a recipient of care to an involved, educated and collaborative partner. As increasingly active owners of their own healthcare journeys, patients and their care teams are well-positioned to provide unique and valuable insights in every stage of the product lifecycle.

Purpose for Interactions with Patient Organizations

Patients have always been at the heart of everything we do at Johnson & Johnson. Patient-centricity is one of the core values embedded in Our Credo and guides how we work. We believe that collaborating with patients, care teams and advocacy organizations is critical to capturing their perspectives as we develop and deliver medicines and solutions to meet their short- and long-term needs. 

We interact with patients and organizations that represent them in diverse ways, ranging from creating awareness for unmet healthcare needs to bringing the patient voice into the R&D process. This statement sets out the Johnson & Johnson Family of Companies (“Johnson & Johnson”) principles and approach for such interactions by the Janssen Pharmaceutical Companies of Johnson & Johnson (“Janssen”) and those working on behalf of Janssen and Johnson & Johnson. We recognize that there is no universally accepted definition of a patient organization and define it broadly to include a wide variety of patient advocacy and patient support groups.

Principles for Interactions with Patient Organizations

To ensure that our interactions with patient organizations are conducted in an ethical, compliant and transparent manner, we are guided by the following principles:

  • Interactions must comply with applicable local laws, the Johnson & Johnson Code of Business Conduct, relevant Johnson & Johnson internal policies and applicable pharmaceutical industry codes and guidelines.
  • The purpose, scope and desired outcomes of any interaction are clearly identified from the outset.
  • Interactions must be based on mutual respect and recognition of the independence of patient organizations in all aspects of their decision-making and activities.
  • Interactions must not replace or impede necessary conversations between the patient and the patient’s healthcare professional(s).
  • Interactions are mutually beneficial for patients whose interests the patient organization represents.
  • Efforts to educate patient organizations on health insurance coverage, reimbursement and access challenges―with the understanding that these patient organizations may engage in direct or indirect advocacy to governments―should only take place if such interaction is consistent with the goals of the patient organization and adhere to applicable transparency and lobbying reporting obligations.
  • Company employees who have an advisory or oversight role with the patient organization must understand and follow any conflicts of interest and transparency policies maintained by the patient organization.
  • Patient organizations must not be requested to promote a Johnson & Johnson product or service. However, in certain countries where permissible, on occasion we may compensate individual patients to participate in Direct-to-Consumer advertising.

Criteria for Patient Organization Interactions

We have clearly defined criteria for interactions with patient organizations that are used to determine appropriate partnerships and ensure that the collaboration is based on mutual goals and distinct areas of need. When considering a partnership, we evaluate:

  • Scope of activity, relevance and reach;
  • Alignment with the strategic priorities of a Johnson & Johnson business segment or operating company;
  • Demonstrated commitment to improving patient experience and access, or showing potential as an emerging organization;
  • Credibility and ability to sustain relationship;
  • Recognition or endorsement by key disease-area associations or authorities;
  • Established representation and leadership in disease state or health condition; 
  • Strategic approach and focus; and
  • Breadth/magnitude of funding support.

Types of Support Provided

Johnson & Johnson supports patient organizations in several ways:

  • Collaborations to raise awareness about diseases or health conditions through diverse activities, of which some may be charitable or may include non-charitable sponsorships;
  • Support activities to help patients and care teams advocate for better treatment, services and assistance;
  • Partner to develop patient education materials;
  • Support of educational programs and conferences;
  • Sponsorship of fundraising events such as galas and walks; and
  • Contributions to support programs and services.

In providing financial and non-financial support we adhere to the following:

  • Strongly advocate for multi-stream funding to any patient organization and seek to limit, with few exceptions, serving as the only source of funding to any patient organization.
  • Be transparent to the public with patient organization interactions, especially should there be instances in which Johnson & Johnson represents the primary source of funding support to a patient organization.
  • Johnson & Johnson is transparent about interactions with patient organizations and encourages patient organizations to do the same about our contributions to their advocacy or patient- or care team-focused activities.
  • Do not seek to prevent other parties, including competitors, from making contributions to the patient organizations we support.

Coordination and Oversight

For our Pharmaceutical business segment, Janssen patient advocacy teams are responsible for coordinating and building strategic partnerships around the world with organizations that represent patients across all Janssen's therapeutic areas. Advocacy representatives are in each geographic region where we operate. Global coordination occurs though the Janssen Global Patient Advocacy Council and the Johnson & Johnson Global Health Policy group.

 

Last updated: July 2019

Patient Engagement

Martin Freeman, Untitled