'Omics' technology is reshaping medicine. What does this mean for patient engagement?

The rapid rise of multi-omic research spanning genomics, proteomics, metabolomics, transcriptomics and beyond is reshaping the future of medicine. These approaches offer unprecedented insight into disease mechanisms, therapeutic targets, and patient stratification. Yet, as the science becomes more layered and more powerful, the expectations placed on patients and families have also increased.

Against this backdrop, Emily Wheeler, Director of Research Partnerships & Development at MQ Mental Health Research, convened a panel representing a cross-section of the patient engagement landscape:

• Sarah Wynn, Chief Executive Officer, Unique

• Junmei Cairns, Associate Director, AstraZeneca

• Helen McNaught, Clinical Patient Engagement Lead, Nexgen Healthcare Communications (representing ISPEP)

This session illustrated how quickly engagement expectations are evolving and how urgently the ecosystem must respond. The conversation was notable not only for its breadth, but for its clarity: patient partnership is emerging as a foundational requirement of multi-omic research; not an add-on, not a courtesy, but a core component of responsible scientific practice.

The Acceleration of Omics and the Imperative of Managing Expectations

The panel opened by examining the tension that rare disease communities face as the diagnostic environment rapidly advances. For decades, precision medicine has existed as a hopeful promise, just out of reach. Today, multi-omic technologies are beginning to convert possibility into practice. But with this progress comes risk: expectations can rise faster than validation.

Sarah Wynn captured this duality clearly: rare disease families are often informed, highly engaged, and deeply invested in scientific development, but they are also vulnerable to narratives of imminent transformation. Public discourse shaped heavily by oncology breakthroughs can unintentionally create timelines or therapeutic assumptions that multi-omic research is not yet positioned to deliver.

The responsibility therefore falls on medicine developers, clinical teams, and patient organisations to cultivate communication that is:

• Honest without being discouraging

• Future-focused without overpromising

• Sensitive to emotional experience without compromising scientific clarity

This balance is not merely an ethical necessity; it is a prerequisite for sustainable trust.

Language as a Strategic Instrument of Inclusion

Communication emerged as one of the most influential determinants of meaningful participation. As the panel explored, the way information is conveyed can either open the door to partnership or quietly close it.

Helen McNaught highlighted the distinction between two dominant models of communication in healthcare: the medical model and the counselling model, each carrying strengths, limitations, and implications for patient engagement.

The medical communication model is grounded in precision, efficiency and the rapid transfer of technical information. It is essential for accuracy, but it often assumes a shared vocabulary that may not exist. This can unintentionally create distance, particularly in multi-omic research where the concepts are complex and the stakes are deeply personal.

The counselling communication model, by contrast, prioritises understanding, emotional context and an invitation to dialogue. It acknowledges that information is interpreted through individual experiences, fears, cultures and expectations. This model fosters agency, allowing participants to ask questions, express uncertainty, and situate new information within the reality of their lives.

The panel underscored that in multi-omic studies where scientific detail intersects directly with identity, family and future that neither model is sufficient alone. The path forward lies in intentional integration:

• Using the precision of medical communication to ensure factual clarity

• Using the relational strengths of counselling communication to ensure comprehension, comfort, and trust

This combined approach transforms communication from a one-way transfer of knowledge into a shared understanding between researcher and participant. Even subtle shifts in phrasing demonstrate this effect. Many patients decline participation when asked to join a “clinical trial,” yet are far more open when invited to “contribute to medical research.” The difference is not semantics; it is framing, tone and emotional resonance.

For engagement to be equitable across diverse populations, the burden of translation must sit with the research community, not with participants. In multi-omic studies, language is not an accessory; it is architecture. It shapes trust, shapes consent, and shapes who feels welcomed into the scientific process.

Embedding the Patient Voice into Scientific Decision-Making

One of the most compelling moments of the session came from an audience question: “How do we bring patients into the most technical, siloed areas of the development process?”

In response, Junmei Cairns emphasised the stringent safety and data governance environment in which pharmaceutical companies operate. Yet she also acknowledged a the firm recognition that patient input strengthens not dilutes scientific integrity.

The panel collectively identified several pathways for deeper integration:

• Involving patients prior to protocol finalisation

• Creating mechanisms for patient organisations to influence research questions

• Providing scientists with training and support to engage confidently with patient partners

• Recognising patients as co-developers of knowledge, not passive data sources

• Ensuring informed consent is truly informed, particularly for retrospective or exploratory omics analyses

These approaches reflect a foundational shift in mindset: patients should shape not only how studies run, but also why they run.

Global Studies, Local Realities: Cultural and Ethical Nuance in Omics

Multi-omic studies rarely operate within the confines of a single country’s regulatory or cultural context. The panel explored how expectations around genetic disclosure, privacy and autonomy vary internationally. For example, the degree to which individuals are expected or are even required to inform family members of inherited risk differs sharply between countries.

These differences are not minor details; they influence consent, communication burdens, and participant trust. The emergence of new diagnostic regulations, such as incoming IVDR frameworks, creates additional layers for researchers to navigate.

From an ISPEPer’s perspective, the takeaway is clear: global research architectures must be accompanied by locally grounded engagement strategies. What constitutes transparency or respect in one jurisdiction may not translate cleanly to another.

Structural Barriers Endure: Burden, Complexity, Accessibility

Despite significant innovation in remote monitoring, home-based sampling and digital navigation tools, practical barriers to participation remain. Families affected by rare diseases often manage significant caregiving responsibilities, complex care pathways, and financial strain. Travel requirements remain cumbersome and can still exclude those who most need representation in research.

Moreover, clinical research remains inherently complex. Without accessible orientation and ongoing support, many patients feel overwhelmed before they have even begun.

The panel underscored the need for:

• Hybrid and distributed study models

• Accessible and continuous communication throughout participation

• Clear reimbursement mechanisms

• Flexible study delivery that meets participants where they are

  
  

The more multi-omic research evolves toward personalisation, the more personalised participation models must become.

A Growing Appetite for Navigation Support—and the Challenge of Reaching the General Public

Patient organisations are reporting increased numbers of individuals seeking guidance on how to engage responsibly with multi-omic research. This signals enthusiasm, empowerment, and trust. Yet it also highlights a systemic gap: the general public remains largely unaware of the role they could play in advancing omics-driven discovery.

To reach individuals who are not already connected to advocacy networks, the field must invest in:

• Community-based outreach

• Culturally relevant communication tools

• Non-technical education

• Public-facing resources co-developed with patient communities

• Partnerships with local health systems, schools, and community leaders

Without broad awareness, participation remains limited to those already equipped to seek it out.

Closing Reflection: Engagement Must Evolve as Rapidly as the Science It Supports

Throughout the discussion, one message resonated: the pace of scientific change in the multi-omic era is extraordinary. These multi-omics are not simply transforming medicine, they are transforming the relationship between people and their data, between communities and scientific systems, between discovery and lived experience.

This evolving landscape demands that the practice of patient engagement keeps pace. Not reactively. Not partially. But deliberately, strategically, and globally. Patients are not ancillary contributors to multi-omic research; they are essential partners whose perspectives shape safer, fairer, and more meaningful science.

ISPEP remains committed to advancing the models of communication, governance, and partnership that ensure patient engagement is worthy of the science and worthy of the people whose lives that science aims to improve.