Ipsen MediPaCe logos

Co-creating a patient engagement impact framework

Recognising patients as key stakeholders and embedding the patient voice, in a meaningful way, into every stage of the medicine’s development process is gradually being recognised as a means to deliver value to both life science companies and to patients and their care partners.

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:

  • Medicines R&D priorities
  • Clinical trial design
  • Regulatory and market access submissions
  • Product support and information
  • Disease support and information


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.

Impact conceptualised as useful outcomes

Generally speaking, participants described impact from patient engagement projects in terms of positive and favourable outcomes; in other words, ‘value’. It can be measured numerically or more subjectively through interpretations. For example, one participant in Argentina spoke about an increase in the number of patients correctly receiving a diagnosis following a physician awareness campaign.

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.

“[We want to know] how would this affect patient outcomes, not just it’s a nice-to-have, actually what’s the tangible? What is this going to actually achieve? And I don’t want to achieve it in 20 years, I want to achieve it now.”

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.

Industry not taking the lead on early impact discussions

There is limited evidence of early discussions, or any expectations, being set by pharmaceutical companies about the potential impact from PEPs. This is an important first-step discussion that needs to happen alongside the contract process and when patients’ role and responsibilities on the PEP are being clarified.

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:

“When you talk about patient engagement, it’s one thing to be able to provide the patient voice but it’s really important for us to understand how the regulatory people weigh that […We] want to know that it’s useful, otherwise it’s an exercise in futility.”

Anonymous study participant

Limited impact measurement and feedback

Most participants state that they receive no formal feedback and follow-up communication of how their involvement in PEPs have led to changes or the insights generated have been incorporated into company decision making. These frustrations are felt particularly strongly where new insights had clearly been generated, yet patient contributions are never to be utilised.

“There was one project, there was a round of patient experts […It] was great work, and I was convinced in the beginning that this project would have a high impact […] ‘never’ heard anything […They] do it in a black box and they store it a big warehouse.”

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.

“If you’re asking me to rate from all the impact you have given over the years – maybe 30% has had an impact and the rest I have a feeling has gone, it’s somewhere up in the air.”

Anonymous study participant

Patients say impact measures should:

(1) Capture relevant context
(2) Capture how patients influenced decisions
(3) Use patient-friendly terminology

Impact measures should capture relevant context

We heard that capturing the necessary context around impact is considered particularly important. For example, this could mean including ‘percentage’ in addition to the ‘number’ of study participants not complying or withdrawing from a study. However, most people said that additional ‘qualitative’ context, such as descriptions, patient quotes, and satisfaction, is needed.

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.

Capture what influence patients had

How patients ‘influenced’ key aspects of early R&D and clinical trial design is another dimension of impact that needs to be made clear. Patients interviewed asked for internal R&D personnel to provide an objective description of how patients influenced target value profile (TVP) development, asset development plan/strategy, and clinical trial delivery such as the development of patient-facing documents or development of clinical outcomes.

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.

Use patient-friendly terminology for impact measures

Some of the original impact measures contained words or phrases that patients felt were less patient-friendly and recommended alternatives. For example, patients’ ‘critique’ of evidence […] amended to patients’ ‘evaluation’ of evidence […] and ‘patient adherence’ to ‘medicine adherence’.

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.

Next steps to implement impact

Patients expect a meaningful relationship with the biopharmaceutical industry, along with transparent dialogue before, during, and after a project. Discussions about planned impact must take place much earlier, ideally at project initiation, with expectations set for all stakeholders.

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.

About the authors

Oleks Gorbenko

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.

Sandeep Bagga

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.

About Ipsen

logo Ipsen RGB


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.

About MediPaCe



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.

Don’t miss your complimentary subscription to Deep Dive and our newsletter

Sign up



Your name

Your e-mail

Name receiver

E-mail address receiver

Your message