Patient Advocacy Groups Say Relationships with Pharmaceutical Companies Must Evolve to Keep Pace with Significant Changes in Healthcare Industry

New Report from inVentiv Health Public Relations Group Examines Best Practices for Partnerships between Advocates and Pharmaceutical Companies

Jun 01, 2015, 11:00 ET from inVentiv Health Public Relations Group

WASHINGTON, June 1, 2015 /PRNewswire/ -- As patients and caregivers are confronted with a dramatically changing healthcare landscape, American patient advocacy organizations are evolving the work they do for these communities. The advocacy groups would like to see their relationships with pharmaceutical companies also change to keep pace, according to a report released today by the inVentiv Health Public Relations Group.

The report, "The New Partnership Paradigm: What Patient Advocates Seek from Pharmaceutical Partners," is based on more than two months of interviews with nearly four dozen patient advocacy organizations representing patients with a variety of diseases and conditions, including cancer, mental health, and rare diseases. It highlights areas in which the patient advocates would like to see change in their relationships with pharmaceutical partners.

"Our research looked at how the external changes in healthcare, such as the Affordable Care Act, have affected the long-standing relationships between pharma and advocacy groups," said Heather Gartman, Managing Director of inVentiv Health PR Group's Washington, D.C. office, who helped lead the research. "Those changes are likely to have significant impact on how both sides regard the benefits of their relationship and work together in the future."

The research revealed several core areas that form a patient advocate 'wish list' of changes intended to create greater mutual benefits and stronger relationships. The list of new best practices includes:

  • Providing input earlier, not only in clinical trial design and execution but also in disease awareness and education campaigns;
  • Strengthening and continuing to keep an open, ongoing dialogue regarding unmet needs, reporting, and information exchange;
  • Creating additional patient registries that can be used for drug trial recruitment and outreach;
  • Rewarding and respecting collaboration among patient groups; and
  • Improving transparency and authenticity.

In the interviews, patient advocates said that these and other proposed changes detailed in the report will move what has largely been a transactional relationship with pharma companies to a more authentic partnership with industry. 

For example, advocacy groups noted that changes in insurance plan benefits, including narrower physician networks, have impeded patient access to specialists. Individuals struggling with cancer or other grave illnesses often don't understand how these changes will affect their care. The narrowing of networks is of concern to patients and pharmaceutical companies and is an issue on which they could partner to find solutions.

Several patient groups also acknowledged the need for greater collaboration and coordination among competing advocacy organizations. They suggested that pharma companies could encourage this trend – for example, by giving preference on funding decisions to organizations that collaborate.

"We undertook this research to assist our clients in both the pharmaceutical sector and the advocacy community in better understanding each side's needs," said Lisa Stockman, President of Public Relations and Medical Communications at inVentiv Health. "Such understanding leads to more effective partnerships and better support for patients facing new challenges in managing their healthcare and supporting research."

The full report based on interviews with 43 organizations is available here. For additional information on the research or services inVentiv Health PR Group provides to patient advocacy organizations and pharmaceutical companies, contact Heather Gartman at

About inVentiv Health Public Relations Group
inVentiv Health Public Relations Group is comprised of five global health communications agencies – Allidura Consumer, Biosector 2, Chamberlain Healthcare PR, Chandler Chicco Agency and Haas & Health Partner – that help launch brands and build the reputations of companies working to improve human health. With an integrated approach to communications, inVentiv Health PR Group agencies offer best-in-class capabilities spanning public relations, digital and social media, medical and scientific education, and analytics and measurement. Our teams create communications that drive corporate value, enhance brand perception, and deliver on the bottom line.

inVentiv Health PR Group is part of inVentiv Health and has offices in New York, Los Angeles, Washington, London, and Paris, and global healthcare network operations around the world. For more information, visit

About inVentiv Health
inVentiv Health is a global provider of best-in-class clinical development and comprehensive commercialization services, seamlessly linking the capabilities of a leading, global Clinical Research Organization (CRO) with a unique Contract Commercial Organization (CCO). inVentiv Health helps clients improve performance, reduce risk, and speed much-needed therapies to market. With 13,000 employees providing services to clients in 70 countries, our global scale and broad expertise make us an attractive strategic partner for companies developing and delivering medicines in a complex operating, regulatory, and reimbursement environment. Our clients include more than 550 life sciences companies, including all 20 of the largest biopharmaceutical companies in the world. inVentiv Health, Inc. is privately owned by inVentiv Group Holdings, Inc., an organization sponsored by affiliates of Thomas H. Lee Partners, L.P., Liberty Lane Partners and members of the inVentiv management team.

inVentiv Health brings business strategy to science and scientific expertise to business for the better treatment of patients worldwide. For more information, visit

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