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Assessing Stakeholder Opinion on Relations between Cancer Patient Groups and Pharmaceutical Companies in Europe

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Abstract

Background: The relationship between the pharmaceutical industry and cancer patient groups has been the subject of much scrutiny and skepticism, and some high-profile negative media coverage has focused attention on some of the problematic aspects of the relationship. Both the pharmaceutical industry and cancer patient groups have made an effort in recent years to improve the transparency and openness of their relations, specifically with regard to the financial support offered by pharmaceutical companies to patient groups.

Objective: The objectives of this survey were to benchmark perceptions held by different stakeholder groups about current relationships between cancer patient groups and pharmaceutical companies in Europe, and to explore opinions about ways in which partnerships between patient groups and pharmaceutical companies could evolve to the benefit of cancer patients.

Methods: The survey was conducted using a structured questionnaire that contained a combination of matrix, scaled, and open-ended questions. The questionnaire was developed based on a literature search and the findings from ten in-depth interviews conducted with policy makers and advocates working at an EU level.

Telephone interviews were carried out using a structured questionnaire with a convenience sample of 161 policy makers, cancer healthcare group representatives, and cancer patient group leaders from France, Germany, Hungary, Italy, Latvia, the Netherlands, Poland, Portugal, Romania, Spain, Sweden, and the UK. The interviews took place in the relevant language of the country.

Results: The current relationship between the pharmaceutical industry and cancer patient groups in Europe is generally viewed as positive, but it is also viewed as being unequal, not transparent enough, and not sufficiently patient-centric. There is broad agreement that cancer patient groups can help companies identify unmet needs and contribute to the development of innovative medicines; however, there is some concern about cancer patients’ competence to take on this role. Also, pharmaceutical companies and patient groups have a common interest in working together on the development of non-promotional patient information and strategies to support medicines adherence. Respondents also indicated that the two sectors have a legitimate interest in ensuring that patients in need access appropriate treatments in a timely manner. Ongoing cooperation between health professionals, pharmaceutical companies, and cancer patient groups is also viewed as important. Efforts should continue to make relations between pharmaceutical companies and cancer patient groups as equal, open, and transparent as possible.

Conclusion: Despite ongoing concerns about the openness and transparency of relations between pharmaceutical companies and patient groups, there is scope for these two sectors to work together on issues of common interest.

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Acknowledgments

This survey was funded by Novartis Oncology Region Europe. Representatives of the company were involved in the survey design, data interpretation, and review and approval of the manuscript (Andras Fehervary and Susanna Leto di Priolo). Phil Riggins was commissioned by Novartis Oncology Region Europe to help design the survey questionnaire, conduct the survey, and carry out the data analysis. He was previously an employee of APCO Insight but is now employed by Brunswick, London, UK. The survey interviews were conducted by staff members of APCO Insight. Kathy Redmond was commissioned by Novartis Oncology Region Europe to provide advice on the survey design, data interpretation, and preparation of the manuscript. Novartis Oncology provides financial support to a number of cancer patient organizations, details of which can be found at: http://www.corporatecitizenship.novartis.com/patients/patient-partnership.shtml

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Authors and Affiliations

  1. Novartis Oncology Region Europe, Largo Umberto Boccioni 1, I-21040, Origgio, Italy

    Susanna Leto di Priolo & Andras Fehervary

  2. APCO Insight, London, UK

    Phil Riggins

  3. Redmond Consulting, Montagnola, Switzerland

    Kathy Redmond

Authors
  1. Susanna Leto di Priolo
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  2. Andras Fehervary
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  3. Phil Riggins
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  4. Kathy Redmond
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Corresponding author

Correspondence to Susanna Leto di Priolo.

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Key points for decision makers

• Patient group/pharmaceutical company relations have been the subject of intense scrutiny and criticism in recent years

• Efforts have been made to improve the openness and transparency of these relations, which has helped to alleviate some of the criticism

• Currently relations between cancer patient groups and pharmaceutical companies in Europe are viewed as being positive but not transparent or sufficiently patient-centric

• There is clear scope for cancer patient groups and pharmaceutical companies to work together on issues of common interest; however, it is important that collaboration between these two parties does not undermine the credibility of patient groups and should be as open and transparent as possible

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di Priolo, S.L., Fehervary, A., Riggins, P. et al. Assessing Stakeholder Opinion on Relations between Cancer Patient Groups and Pharmaceutical Companies in Europe. Patient 5, 127–139 (2012). https://doi.org/10.2165/11589210-000000000-00000

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