To identify best practices, the difference made – or the ‘impact’ of engaging with patients – must be measured. Ipsen and MediPaCe explored patient experts’ and patient organisations’ (PO) perceptions and experiences with impact measurement and worked with them to co-create an impact framework for internal company utilisation.
Depth interviews were conducted with 13 patient organisation representatives and patient experts, exploring their experiences of engagement and thoughts on 23 candidate impact measures categorised into five groups:
Findings were discussed and validated with a patient-led working group. The full results outlining how the impact measures were discussed and revised have been published. Here, we examine how patients view the impact from projects and their experiences of discussing impact measurement with life science companies.
Others wanted to be able to look beyond numbers and say, for example, “So, we had six meetings, but actually, out of that x, y, z happened, and it was really positive.” The term ‘value-impact’ was coined during this study to capture these positive interpretations.
Patients involved in patient engagement projects want to influence change that will deliver real and tangible outcomes. There is a clear sense of urgency and empathy as participants discussed: the impact of community advisory boards that they had helped set up; contributions made to lay language disease information; coordinating delivery of educational events for patients.
Anonymous study participant
Patient participants also highlight the importance of impact from patient engagement projects on industry itself. For instance, routinely working with the patient community helps shift attitudes, learn about the right language to use with the collaborating patients, and helps companies know and understand the emotional story in order to better engage with the patients.
Invariably PO representatives provided their own notions as to why patients’ perspectives need to be captured. One US participant outlined a number of innovative ways in which her PO engages with pharmaceutical companies and emphasised the need for patient insights to impact decision-making:
Anonymous study participant
Anonymous study participant
Some companies only provide feedback reactively, for example, when POs request follow up information. Impact measurement, however, seems more likely to occur where there are larger-scale, longer-term, and deeply established relationships developed, e.g., one UK-based participant had a particularly strong relationship with one pharmaceutical company that was oriented around a single medicine (for use in rare disease) with a dedicated team attached to the PO.
Anonymous study participant
Patients say impact measures should:
(1) Capture relevant context
(2) Capture how patients influenced decisions
(3) Use patient-friendly terminology
This tendency for a deeper and more nuanced understanding is also seen in patients’ strong preference to be involved in developing Patient Reported Outcome and Experience Measures, recording the ‘day-to-day’ experience of their condition and the value delivered by a medicine. The support for the ‘patient feedback’ impact measure is a further endorsement of a more descriptive understanding of the impact of involvement in PEPs.
The parallels between the patient-centred method and qualitative inquiry have been acknowledged previously; both adopt a holistic, naturalistic, and empathic understanding of the phenomena being investigated.
There was a sense that they are not only interested in the ‘how many’ but also in the subjective and interpretive reporting of impact, including capturing patients’ experiences of newly developed support programmes or appropriately contextualising a poor hospital visit experience during clinical study participation that may otherwise unfairly reflect on the biopharmaceutical company’s broader research programme.
This call for ‘greater context’ reinforces recent work that a “set of coherent measures” is needed rather than the application of single measures. The present study now provides the rationale for this claim, crucially, from the patient’s perspective.
In addition, post-involvement feedback will capture patients’ opinions and sentiments about the degree to which they felt they were ‘genuinely’ able to influence decision-making processes.
This last change demonstrates how patient insight into co-developing impact measures can reframe companies’ thinking, shifting the emphasis to developing medicines and support programmes that patients value and which enable adherence rather than attributing lack of adherence solely to patients’ behaviour.
Outputs must not be put in a ‘black box’. How value-impact was delivered, incorporated into decision-making, and operationalised should be proactively shared with the patient community to avoid those partnered with feeling frustrated about potential wasted opportunities. Establishing long-term, sustainable partnerships with patient experts and POs is another critical success factor.
This study provides additional considerations for the development of new impact measures: ensure greater context, capture how patients have influenced the project, and use patient-friendly terminology. Impact measures should also be tailored to the stage of a medicine’s lifecycle, in which patient engagement projects are being undertaken.
Having co-developed a list of impact measures, the next step for companies is to consider how best to implement them in practice. Immediate practical considerations are to develop the right qualitative and quantitative data collection tools, assign new roles and responsibilities within the company, and develop data visualisation both internally and externally.
It will also be important to further involve patients in the implementation process ensuring, for instance, newly (co-)developed data collection tools capture the various aspects of value-impact.
Dr Oleksandr Gorbenko, MD, PhD, BCMAS
Dr Oleksandr Gorbenko is an expert in public health, medical affairs, patient affairs, and community engagement with overall 22 years’ experience in pharma industry. He graduated as a medical doctor (general practice) in O.Bogomolets’ National Medical University and Shupyk National Medical Academy of Postgraduate Education and later worked on his PhD dissertation in the Ukrainian Institute of Public Health MOH.
Since 2019, Dr Gorbenko has a role of global patient affairs director at Ipsen, with the focus on developing necessary capacities/capabilities cross-functionally, advice-seeking and insights gathering with patient experts throughout the Medicines Development Continuum, patient experience mapping, partnership with several patient organisations, substantiation and inclusion of the specific PRO/PCO measurements as endpoints, defining the patient value attributes within the Target Value Profiles (TVP) for new medicines, KPIs and impact indicators on patient centricity for big pharma and other programmes. Board Certified Medical Affairs Professional (ACMA, 2020), he is a member of MAPS Focus Area Working Group on Patient Centricity.
Dr Sandeep Bagga
Sandeep Bagga is research and operations lead at MediPaCe. He is both a qualitative researcher and pharmacist, with senior-level experience in hospital, community, and business settings.
Sandeep has a broad portfolio of patient research from accurately mapping patient pathways, lived experiences of disease and treatment, through to using digital ethnography to identify normalised unmet needs. Throughout, he co-creates research design and delivery with patients themselves to ensure the project is respectful, compassionate, and that outcomes are accurately measured, informative, and relevant.
At Ipsen, we’re dedicated to improving people’s lives and health outcomes. Our 4,500 employees around the world are committed to tackling areas of high unmet medical need to improve the quality of life of patients and caregivers.
Ipsen’s vision is to be a leading global mid-size biopharmaceutical company, with a focus on transformative medicines in three key therapeutic areas: oncology, rare disease, and neuroscience.
Under the overarching theme of ‘Focus. Together. For patients & society’, Ipsen is focusing on four strategic priorities to accelerate our innovation and drive positive impact for patients, employees, shareholders, and society – a strategy for the short and long term:
1. Bring the full potential of our innovative medicines to patients.
2. Build a high-value, sustainable pipeline.
3. Deliver efficiencies to enable targeted investment and growth.
4. Boost a culture of collaboration and excellence.
MediPaCe is a values-first, purpose- and data-driven, patient engagement and research consultancy to the global Life Sciences and Medical technology industry. Our services fall into three main categories: strategic consultancy, delivery of patient engagement and involvement, and patient research.
Our approach is to integrate these areas to design optimised solutions that are delivered with strong methodology, open communication, and to gather impactful results that can be measured. MediPaCe was founded on the core belief that, to achieve the outcomes that matter most to patients, you must work in equal partnership with patients themselves. This foundational principle is the driving force behind our purpose-driven commitment to provide our clients with co-created insights that consistently deliver results.