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A Pilot Study to Identify Areas for Further Improvements in Patient and Public Involvement in Health Technology Assessments for Medicines

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Abstract

Background

Patient and public participation in health technology assessment (HTA) of medicines has been cited as an important component of the decision-making structure; however, how to actually achieve meaningful involvement is less understood.

Objectives

Our objectives were to conduct a pilot study to form the basis of future research and to gain insight into how to practically and meaningfully advance patient and public input in HTAs for medicines.

Methods

Semi-structured interviews (n=13) with informants in Australia (n=7), Canada (n=3), and the UK (n=3) were conducted across agencies and experts (n = 9), as well as patient and advocacy groups (n = 4). Results: This pilot study identified through structured interviews three areas for further consideration. Advancement area 1 indicates that industry could help bring the patient perspective into the HTA process through incorporating patient experiences early in the drug development process and by including qualitative research on patient experiences in HTA dossiers. Advancement area 2 involves recognizing and supporting the role of patient advocacy groups, and making use of their access to the genuine patient perspective and experience of living with the condition in question. Finally, advancement area 3 is the continuous development of HTA systems and processes to better facilitate involvement, increasing transparency and feedback, exploring new options for reaching patients, and focusing on creating an active and informed health consumer.

Conclusions

The HTA process is becoming increasingly transparent to patients and the public; however, more effort is required to fully engage patients in the decision-making processes for medicine HTAs. This pilot study identified three key areas for further advancement in this field, and recognized a need for further research in the areas of measuring the impact of patient engagement on decision making in medicine HTAs, as well as the best methods to better prepare patient advocacy groups through HTA education and training. These research recommendations will form the basis of a future study with a larger, more comprehensive sample.

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Acknowledgments

This research was funded by Eli Lilly and Company and was also supported by a small research and industry partnership grant from the Faculty of Medicine at the University of Sheffield.

Eli Lilly and Company was the commissioner and funder of this research project and David Grainger (Global Public Policy Director, Eli Lilly) was the lead investigator. The project was led, organized, delivered, and written up for publication by the two named authors. Josie Messina is a Research Associate at the University of Sheffield, and worked with Eli Lilly to complete this project on secondment in Sydney, Australia in March–July 2010. A small grant was provided by the University of Sheffield to cover travel expenses to Australia to complete this project. David Grainger holds shares in Eli Lilly and Company. Both authors declare no other conflicts of interest relevant to the conduct of this research or the contents of this paper. David Grainger acts as the guarantor for the content of this paper.

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Authors and Affiliations

  1. Section of Public Health, School of Health and Related Research (ScHARR), University of Sheffield, 30 Regent Street, Sheffield, S1 4DA, UK

    Josie Messina

  2. Global Public Policy, Eli Lilly and Company, Sydney, New South Wales, Australia

    David L. Grainger

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  1. Josie Messina
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  2. David L. Grainger
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Correspondence to Josie Messina.

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Messina, J., Grainger, D.L. A Pilot Study to Identify Areas for Further Improvements in Patient and Public Involvement in Health Technology Assessments for Medicines. Patient 5, 199–211 (2012). https://doi.org/10.1007/BF03262492

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