The 8th Patient Centricity & Collaboration World Congress: Day One Highlights

Taking place in London over two days, this Congress brought together professionals from all over the world and featured a rich variety of stakeholders, including people with lived experience, pharma, regulators (MHRA), the NIHR (commercial arm), solution providers, and more. Day One topics included:

• The need for operational and systems-wide reform

• Patient experience data

• Collaboration and partnership

  
  

Read on to learn more…

Embedding patient perspectives into decision-making

The opening panel of this year’s congress featured outstanding patient engagement professionals including ISPEP Advisory Board Member, Danielle Drachmann, and Jasmine Malone from OPEN Health, one of ISPEP’s founding sponsors.

Early on, Sarah Phillips from IQVIA highlighted the “fake separation” of clinical and quality of life data in medical publications, noting how these data often appear in different journals despite all being relevant to clinical decision-making and patient experience.

Operational barriers to patient-focused practice were discussed, highlighting a need for integrating processes, systems, and data reporting – with patient input – to reduce this friction. The importance of patient centricity in risk mitigation was noted, indicating the value to industry as well as patients in bringing in external voices.

Danielle emphasised how the business value of patient engagement needs to be conceptualised as ‘return on engagement’ as opposed to ‘return on investment’. Her rationale was that given good patient engagement practice is about building trust and sustained, holistic collaboration, rather than one-off projects, it makes more sense to measure value in this way.

Jasmine noted how while AI should never replace real patient insights, integration of AI technology may expand opportunities for patient engagement professionals to focus more time and energy on critical thinking.

Towards the end of the session, Danielle shared a powerful example of a medical breakthrough identified by a caregiver, in which a link between low blood sugar and Down’s syndrome was spotted by a mother in the United States and then went on to be scientifically validated. Danielle went on to mention how in Denmark, a medical school module on embedding patient partnerships is being created, with ISPEPer Steve Clark noting in the audience that this would also be a great step for continuing medical education (CME) courses given that graduate medics may encounter barriers from senior colleagues in attempting to implement newer, more patient-focused practices.

Patient focus from the UK regulatory agency

In this presentation, MHRA CEO Lawrence Tallon noted the need for evolution of patient information leaflets, stating “We should be writing for the patient, not [just] for the regulator”. Lawrence also discussed the concept of the "preference zone" where rather than regulators stipulating what treatments must be prescribed, patients can make personalised, informed decisions within boundaries of acceptable choice based on benefit-risk calculations.

Focusing on rare diseases, Lawrence went on to highlight the need for systemic changes to improve the accessibility of therapies for rare diseases, such as developing master protocols for treating multiple patients under one approval, rather than separate approvals for each individual.

“[In rare disease treatment,] we know that the science is no longer the limiting factor in many of these cases; it is the system, the regulatory system, the funding system, the reimbursement system, the healthcare delivery system, that is limiting those people – often children – from having access to rare disease therapies.”

Treatment tolerability from patient perspectives

We then heard from Aude Roborel de Climens (IQVIA). Aude set the scene by outlining how definitions of tolerability have evolved over the past 20 years, noting that tolerability is a ‘patient’ concept to be understood distinctly from that of safety. Aude went on to present excellent data collected through a Cancer Experience Registry survey in favour of evolving traditional conceptualisation and measurement of tolerability (see image) in line with patient perspectives.

The growing expectations from regulators regarding provision of patient-reported outcome data on tolerability were also highlighted. A quote included from EMA read "Individual patient experience can point out issues that are difficult to identify via other sources, such as the persistence of an adverse reaction or its impact on quality of life.”

Working to improve patient voice diversity at NIHR

A presentation from the NIHR showed how the organisation is working to enhance the diversity of their patient representative pool, considering factors such as familiarity with research / patient and public involvement, ethnicity, and age. Noting a focus in the presented data on the overall recruitment pool, Olivia Kersey, ISPEP Operations and Engagement Director, flagged the need for also tracking the demographics of patient representatives who actually participate in research projects in order to gain a clearer picture of the diversity of voice in NIHR-managed projects; this was subsequently revealed to be the next step in NIHR’s ongoing internal efforts. Olivia also highlighted the need for more nuanced reporting of demographic inclusion on a per-project level: “Take the example of female inclusion… if the data are just on that yes/no level, we can’t see whether the proportion of female participants was 1% or 100%...we need more context to understand the true meaning of these inclusion data.” 

A best-practice case study in creating a patient information platform

Next up was a presentation from OPEN Health covering the development of an exemplary digital ovarian cancer resource, the ‘Olivia’ platform. Numerous examples of excellent practice were demonstrated through this project, including:

• Thoughtful localisation (e.g., regarding language, medical landscape, and cultural adaptation)

• Funding by industry followed by ‘gifting back’ of the platform to the partnering advocacy group

• Sensitive delivery of emotionally challenging material through:

  • Sense-checking language, content, and tone with people with lived experience

  • Building gradual exposure into user experience (e.g., "If you're ready to learn more, click here”)

Patient experience data for identifying unmet needs and informing policy

We were thrilled to see a presentation from the International Bureau for Epilepsy (IBE), one of ISPEP’s PO Bursary Awardees. IBE Head of Engagement, Claire Nolan, showcased the Global Epilepsy Needs Study (GENS), highlighting its collaborative effort involving 160 chapters in 110 countries. The study aimed to identify unmet needs beyond seizures, with findings from nearly 5,300 people covering healthcare, safety, knowledge, and mental health. The findings will inform policy and support global epilepsy initiatives.

Watch this space for a Voice to Value case study on this project coming soon to the ISPEP Hub! Previous contributions from the IBE to the ISPEP Hub can be found here and here.

Patient partnership practices

After travelling for two days and battling a snow storm, star ISPEPer Ify Osunkwo took to the stage to share her empathetic and pragmatic approach to sustaining impactful patient partnerships. After describing outdated barriers to dignity and equity such as excessively long consent forms, Ify shared numerous calls to action, including:

• Audit current patient partnerships and partnership practices and produce an assessment of gaps and priorities to address within the next 90 days.

• Commit to and implement one structural change in organisational governance (for example, a consistent regular patient-insights generation process).

• Measure and report to leadership on patient advisory board outcomes.

• Share relational assets and networks with patient organisations (for example, provide conference passes and foster interpersonal introductions) to build sustained relational capital.

  
  

The Impact of ISPEP: the new era of collaboration in healthcare

Later, our very own Emma Sutcliffe presented the growth and impact of ISPEP, highlighting initiatives such as the inaugural International Patient Engagement Day, the ‘Got Your Back’ campaign, and various research projects. Emma also referenced ISPEP plans to further enhance access to memberships while sustaining the society’s not-for-profit activities such as education and evidence delivery and work towards establishing a professional certification programme for patient engagement professionals.

“We're not here to compete. We're not here to do anything other than find the gaps and take action, small actions every day by experts.” – Emma Sutcliffe 

Improving communication in healthcare needs collaborative solutions

Finally, we closed Day One with an excellent presentation from ISPEP White Ribbon Ambassador and PEP Talks Speaker Steve Clark. 

"In an area where we've got information overload and misinformation, we've got snake oil salesmen selling 'easy fixes' in an area where there's a lack of understanding of what's being said." – Steve Clark

Steve noted how, as a pharmaceutical professional with lived experience as a patient advocate, he has been able to consider communication in healthcare from a range of perspectives. This dual expertise has influenced his ideas for collaborative improvement in this area, which include:

• Integrating communication skills content into routine clinical training modules for new disease/drug education.

• Developing a curated, certified patient information area that links resources from charities, the NHS, and pharma.

Summary

Key takeaways:

• The medical system and pharmaceutical industry require systemic reform to truly integrate patient-focus practices. This requires key changes to medical education, pharmaceutical operations, and conceptualisation of data and value.

• Pre-competitive sharing of patient insights is a hugely positive step and already being done.

• Treatment tolerability must be captured both from and in line with patient perspectives.

• Ensuring diversity of voice must be an active process.

• Patient information platforms are best created through meaningful collaboration with people with lived experience.

• Patient organisations are generating valuable data to inform identification of unmet needs and opportunities for policy advocacy.

• Effective patient collaboration practices must be both empathetic and pragmatic, tangibly improving systems and processes to ensure dignity in partnership.

• ISPEP is focusing on continuing to build the patient engagement ecosystem and widen access to membership.

• Healthcare communication must take current information challenges into account and be embedded into clinical training.

Calls to action: 

• Stop asking questions we already know the answer to.

• Integrate processes, systems, and data reporting – with patient input – to reduce operational barriers to patient-focused practice.

• Ensure metrics are fit-for-purpose in demonstrating value: for sustained patient engagement, measure ‘return on engagement’ rather than ‘return on investment’.

• Take tangible actions to build relational capital with patient organisations and systematically enhance partnerships.

• Transcend reliance on pilot projects and commit to long-term initiatives to bring meaningful, sustained change.

• Centralise trusted patient information and embed patient communication and partnership training into clinical education.

• Join the ISPEP movement to #CarryTheChange for patients worldwide.

Stay tuned for Day Two highlights – coming soon to the ISPEP Hub!