Building trust between patient groups and industry in troubled times: Report from ECRD

By: Veronica Lopez, MPH


Insights from this year’s European Conference on Rare Diseases and Orphan Products (ECRD) reinforce the necessity of fostering trust in collaborations between industry and patient groups. At the same time, they point to barriers that prevent the development of this essential component of successful partnerships.  In a panel chaired by Mark Krueger, MPH, MK&A’s president, industry representatives discussed how to create productive, respectful relationships between pharmaceutical and biotech companies and advocacy groups.

“You are not going to agree on every point, but this is something that you need to understand before going into the partnership” said Thomas J Croce, RPh, Shire’s head of global patient advocacy.  During the panel, Croce explained that Shire builds trust by having each partner share openly what it seeks from the relationship and agree to focus on those objectives that overlap.  Advocates and the company leave room for disagreement. Shire has most recently used this approach to create the successful hereditary angioedema (HAE) patient identification and diagnosis program, in collaboration with the US Hereditary Angioedema Association (HAEA) and HAEi, the international umbrella organization for HAE patient groups. Stella Blackburn, MBBS, MA, MSc, FRCP, FISPE, vice president and global head of risk management and real world and late phase research at Quintiles, also stressed the importance of delineating roles in the partnership once the objectives are in place.  This led to the effective collaboration of over 30 private and public organizations through the European Commission funded study, PROTECT, which gathers post-market surveillance data from pregnant women.

Michael Lüttgen, PhD, vice president of international alliance management at Horizon, noted that “one-off” partnerships are unlikely to build trust.  Horizon’s long-term initiative to enhance registries for patients with urea cycle disorders with several patient groups, has established the company as a credible partner because of a joint, long-term commitment.  Fostering openness and trust requires on-going and meaningful dialogue among all stakeholders, added Josie Godfrey, MA, global public policy and external affairs at SOBI. She discussed SOBI’s program to co-create packaging for haemophilia treatment with patients through collaboration with haemophilia associations from nine European countries.

Mark Krueger summarized the panelists’ comments by describing a virtuous circle:  Trust is necessary to create equal partnerships, and equal partnerships create the most productive and mutually beneficial partnerships. Trust depends on alignment of objectives and on-going dialogue, a clear delineation of roles, and a periodic demonstration of commitment to the relationship.

Partners should focus where they agree, agreeing to disagree if necessary.  Respect, coupled with a commitment to bringing knowledge, support and access to patients and their families, will lead to productive conversations and stronger partnerships among stakeholders.

 

To learn more about this topic or the partnerships mentioned within this blog, please contact Veronica Lopez at vlopez@mkanda.com.




About the Author:

Veronica Lopez, MPH

Veronica Lopez, MPH, is the strategic associate at MK&A. Veronica helps MK&A develop new ways of building equitable and responsible partnerships between industry and patients, advocates, health care professionals, and policy makers.

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