Embedding Patient-Centricity by Collaborating with Patients to Transform the Rare Disease Ecosystem.
Pharmaceut Med. 2023 Jul; 37(4):265-273.PM

Abstract

What is patient-centricity? In some contexts, it has been associated with targeting therapies based on biomarkers or enabling healthcare access. There has been a surge in patient-centricity publications, and in many cases for the biopharmaceutical industry, patient engagement is used to endorse pre-held assumptions at a specific moment in time. Rarely is patient engagement used to drive business decisions. Here we describe an innovative partnership between Alexion, AstraZeneca Rare Disease and patients that allowed a deeper understanding of the biopharmaceutical stakeholder ecosystem and an empathic understanding of each patient's and caregiver's lived experience. Alexion's decision to build patient-centricity frameworks resulted in the formation of two unique organisation design platforms: STAR (Solutions To Accelerate Results for patients) and LEAP (Learn, Evolve, Activate and deliver for Patients) Immersive Simulations. These interconnected programmes required cultural, global, and organisational shifts. STAR generates global patient insights that are embedded in drug candidate and product strategies while helping to establish enterprise foundational alignment and external stakeholder engagement plans. LEAP Immersive Simulations produce detailed country-level patient and stakeholder insights that contribute to an empathetic understanding of each patient's lived experience, support country medicine launches and provide ideas to have a positive impact along the patient journey. Combined, they deliver integrated, cross-functional insights, patient-centric decision making, an aligned patient journey, and 360° stakeholder activation. Throughout these processes, the patient is empowered to dictate their needs and validate the proposed solutions. This is not a patient engagement survey. This is a partnership where the patient co-authors strategies and solutions.

Links

PMC Free PDF

Authors+Show Affiliations

Sharma R

Global Patient Insights and Solutions, Alexion, AstraZeneca Rare Disease, 1385 Craigleith Road, Oakville, Vaughan, Canada. rohita.sharma@alexion.com.

Ahmed S

Founder/Executive Director, The Sumaira Foundation, Boston, MA, USA.

Campagnari J

Global Patient Insights and Solutions, Alexion, AstraZeneca Rare Disease, Boston, MA, USA.

Huff W

Vice President of Programs and Clinical Care, Myasthenia Gravis Foundation of America, Westborough, MA, USA.

Lloyd L

NMOSD Patient Advocate, Port Moody, BC, Canada.

MeSH

HumansEcosystemRare DiseasesPatientsHealth Services AccessibilityBiological Products

Pub Type(s)

Journal Article

Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

37142887

Citation

Sharma, Rohita, et al. "Embedding Patient-Centricity By Collaborating With Patients to Transform the Rare Disease Ecosystem." Pharmaceutical Medicine, vol. 37, no. 4, 2023, pp. 265-273.

Sharma R, Ahmed S, Campagnari J, et al. Embedding Patient-Centricity by Collaborating with Patients to Transform the Rare Disease Ecosystem. Pharmaceut Med. 2023;37(4):265-273.

Sharma, R., Ahmed, S., Campagnari, J., Huff, W., & Lloyd, L. (2023). Embedding Patient-Centricity by Collaborating with Patients to Transform the Rare Disease Ecosystem. Pharmaceutical Medicine, 37(4), 265-273. https://doi.org/10.1007/s40290-023-00474-y

Sharma R, et al. Embedding Patient-Centricity By Collaborating With Patients to Transform the Rare Disease Ecosystem. Pharmaceut Med. 2023;37(4):265-273. PubMed PMID: 37142887.

* Article titles in AMA citation format should be in sentence-case

TY - JOUR T1 - Embedding Patient-Centricity by Collaborating with Patients to Transform the Rare Disease Ecosystem. AU - Sharma,Rohita, AU - Ahmed,Sumaira, AU - Campagnari,Judy, AU - Huff,Wendi, AU - Lloyd,Lelainia, Y1 - 2023/05/04/ PY - 2023/03/14/accepted PY - 2023/7/3/medline PY - 2023/5/5/pubmed PY - 2023/5/4/entrez SP - 265 EP - 273 JF - Pharmaceutical medicine JO - Pharmaceut Med VL - 37 IS - 4 N2 - What is patient-centricity? In some contexts, it has been associated with targeting therapies based on biomarkers or enabling healthcare access. There has been a surge in patient-centricity publications, and in many cases for the biopharmaceutical industry, patient engagement is used to endorse pre-held assumptions at a specific moment in time. Rarely is patient engagement used to drive business decisions. Here we describe an innovative partnership between Alexion, AstraZeneca Rare Disease and patients that allowed a deeper understanding of the biopharmaceutical stakeholder ecosystem and an empathic understanding of each patient's and caregiver's lived experience. Alexion's decision to build patient-centricity frameworks resulted in the formation of two unique organisation design platforms: STAR (Solutions To Accelerate Results for patients) and LEAP (Learn, Evolve, Activate and deliver for Patients) Immersive Simulations. These interconnected programmes required cultural, global, and organisational shifts. STAR generates global patient insights that are embedded in drug candidate and product strategies while helping to establish enterprise foundational alignment and external stakeholder engagement plans. LEAP Immersive Simulations produce detailed country-level patient and stakeholder insights that contribute to an empathetic understanding of each patient's lived experience, support country medicine launches and provide ideas to have a positive impact along the patient journey. Combined, they deliver integrated, cross-functional insights, patient-centric decision making, an aligned patient journey, and 360° stakeholder activation. Throughout these processes, the patient is empowered to dictate their needs and validate the proposed solutions. This is not a patient engagement survey. This is a partnership where the patient co-authors strategies and solutions. SN - 1179-1993 UR - https://www.unboundmedicine.com/medline/citation/37142887 DB - PRIME DP - Unbound Medicine ER -

Tags

Embedding Patient-Centricity by Collaborating with Patients to Transform the Rare Disease Ecosystem.Pharmaceut Med. 2023 Jul; 37(4):265-273.PM