Aurora Todisco

In this blog, Aurora Todisco, hub Topic leader for Patient Engagement, shares her advice (and a handy ‘mini-guide’) to help people make the shift from consultation to co-production.  Moving beyond asking for views Consultation is often the default approach to involvement: organisations ask for feedback, gather opinions, and then make decisions internally. While consultation has value, it is not the same as co‑production. The attached mini‑guide, From Consultation to Co‑Production: A Beginner’s Guide, is designed to help teams understand the difference – and take realistic steps towards shared decision‑making. Mini guide - From_Consultation_to_Co-Production_A_Beginners_Guide.docx Understanding the spectrum Involvement exists on a spectrum, from one‑off consultations through to full co‑production. Co‑production means working with people with lived experience as partners, not simply as contributors. This blog and the attached mini-guide, breaks the concept down into manageable steps, recognising that co‑production doesn’t happen overnight. Starting small and building trust One of the biggest barriers to co‑production is the belief that you have to do everything at once. In reality, co‑production often starts with: Small joint projects Clear, shared goals Honest conversations about roles and constraints By starting small, teams can build confidence, trust and shared ways of working over time. What good co‑production looks like The mini-guide focuses on a few core principles: Sharing decision‑making power Being transparent about what can and can’t change Documenting decisions and learning Investing in relationships through regular communication These practices help move involvement from a transactional activity to a collaborative partnership. Why this guide now? Many organisations talk about co‑production, but fewer feel confident putting it into practice. This beginner’s guide offers a realistic, supportive entry point – helping teams move forward without feeling overwhelmed.

In this blog, Aurora Todisco, our Topic leader for Patient Engagement, shares her Lived Experience Involvement toolkit. A practical resource designed to help anyone involved in patient and public involvement, engagement or lived experience work – whether you’re just starting out or looking to strengthen existing practice. Many organisations want to involve people with lived experience in their work but often struggle with how to do this well in practice. Good intentions can quickly be undermined by unclear processes, inaccessible sessions, or a lack of follow up. That’s why I created the Lived Experience Involvement Toolkit – a practical, flexible resource designed to support meaningful involvement in workshops, consultations and research activity. What is the Toolkit? Lived Experience Toolkit.pdf The Toolkit is a hands on resource pack that helps teams plan, run and reflect on involvement activities. Rather than focusing on theory, it provides ready to use tools that can be adapted to different contexts and levels of experience. Inside, you’ll find: simple templates for role descriptions, emails invites, and examples of ground rules open ended questions that encourage discussion and reflection clear do / don’t guidance based on common mistakes practical tips to support accessibility, inclusion and participation. A quick reference checklist included at the end of the toolkit pulls everything together, making it easy to prepare for sessions without reinventing the wheel. Why this matters Involvement can easily become tokenistic if people feel their time, expertise or emotional labour isn’t respected. Small practical details – breaks, clear expectations, accessible formats, and genuine acknowledgement – make a significant difference to people’s experience. This Toolkit supports teams to: create safer, more inclusive involvement spaces show respect for lived experience contributions capture learning in a consistent and ethical way build confidence in running involvement activities Who is it for? The Toolkit is suitable for anyone involved in patient and public involvement, engagement or lived experience work – whether you’re just starting out or looking to strengthen existing practice. If you want involvement to be meaningful rather than performative, this Toolkit is a practical place to begin.

In this blog, Aurora Todisco, our Topic leader for Patient Engagement, explains why tokenism is a barrier to quality and safety. She shares five steps to help you avoid tokenism in healthcare and increase trust and engagement.  Tokenism in Patient and Public Involvement and Engagement (PPIE) occurs when involvement of lived-experience partners is superficial, symbolic, or performed to meet a requirement rather than to genuinely inform decisions. Avoiding tokenism is essential for building trust, achieving meaningful insights, and linking PPIE to patient safety outcomes. Why Tokenism Matters Tokenistic approaches frustrate participants, waste organisational effort, and risk decisions being made without critical perspectives. It can also undermine the credibility of PPIE work and damage relationships with lived-experience partners. Steps to Avoid Tokenism 1. Assess readiness Ensure the organisation is prepared to involve participants meaningfully. Tokenism often arises when involvement is reactive or rushed. Being ready signals respect for participants’ time and expertise. 2. Define clear goals Participants should understand why they are involved and what impact their input will have. Undefined goals create confusion and disengagement. 3. Allocate resources Provide adequate staff time, training, and reimbursement for participants. Tokenistic involvement often happens when organisations attempt engagement without proper support. 4. Prepare staff Ensure staff facilitating PPIE understand principles, value lived-experience, and are equipped to act on insights. This prevents meetings or projects from being performative. 5. Close the feedback loop Participants must see how their contributions influence outcomes. Without feedback, involvement risks feeling meaningless, reinforcing tokenism. Resource highlight: The Avoiding Tokenism Checklist provides practical guidance to ensure involvement is genuine, inclusive, and impactful. Please download the attached guide to use in your work. Quick reference checklist Assess organisational readiness Define clear involvement goals Allocate resources for meaningful participation Prepare staff to facilitate and act on input Provide feedback to participants Avoiding tokenism enhances engagement, builds trust, and improves care quality and safety, while making PPIE genuinely impactful for all participants. Share your insights Have you been involved in Patient and Public Involvement and Engagement (PPIE) as a patient or part of the project team? What have you learnt rom your experience? Share your comments below (sign up here first for free) or contact the editorial team, at [email protected].

In this blog, Aurora Todisco, our Topic leader for Patient Engagement, explains why it is so important to make sure meetings are inclusive. Aurora outlines five practical steps to help make inclusivity a reality, and shares two additional resources: Inclusive Meeting Checklist for PPIE  Making Meetings Inclusive: A PPIE-Friendly Facilitators Guide  Inclusive meetings are essential for meaningful Patient and Public Involvement and Engagement (PPIE). Without careful planning, meetings can unintentionally exclude participants, marginalise voices, or create barriers to engagement — undermining both trust and patient safety. Thoughtful preparation ensures everyone can contribute effectively and that lived experience is genuinely valued. Why inclusive meetings matter Excluding voices in meetings is not just a missed opportunity — it can lead to decisions that fail to reflect real patient needs. Inclusive meetings promote participation from diverse perspectives, helping organisations identify risks, gaps, and improvement opportunities that might otherwise go unnoticed. Steps to make meetings inclusive 1. Plan accessible meetings and venue set-up Check physical or online venues for accessibility: lighting, seating, Wi-Fi, captions, and transport options. Accessibility ensures all participants can attend and engage fully, removing common barriers. 2. Prepare materials Provide large font, plain English, and easy-read options. Accessible materials help participants follow discussions, contribute meaningfully, and reduce reliance on staff to interpret content. 3. Clarify roles and expectations Explain who is facilitating and each participant’s role. Introductions and clear expectations help participants understand how they can contribute and reduce uncertainty about meeting purpose. 4. Facilitate balanced participation and support participants Encourage input from quieter voices while preventing domination by louder participants. Provide breaks, encourage questions, and offer guidance where needed. This ensures diverse perspectives are heard and respected. 5. Follow-up Share summaries, action points, and thank participants. Follow-up closes the loop, showing participants their contributions matter and reinforcing trust in the PPIE process. Resource highlights I recommend using the following downloadable resources (attached): Inclusive Meeting Checklist for PPIE — practical tips for venue setup, materials, roles, participation, and follow-up. Making Meetings Inclusive: A PPIE-Friendly Facilitators Guide — additional guidance for accessible planning, supporting participants, and balancing voices. Inclusive_Meeting_Checklist_for_PPIE.pdfInclusive_Meeting_Checklist_for_PPIE.pdf Quick reference checklist Venue is accessible (lighting, seating, Wi-Fi, captions, transport). Materials are easy-read (large font, plain English, easy-read). Roles clarified and introductions made. Facilitate balanced participation and support quieter voices. Provide breaks, encourage questions, and follow-up shared. Inclusive meetings are key to meaningful PPIE. When participants feel welcomed, prepared, and heard, their insights can directly improve care quality and patient safety. Thoughtful planning, facilitation, and follow-up ensure that every meeting is an opportunity to make engagement impactful.

In this blog, Aurora Todisco, our Topic leader for Patient Engagement, explains why it is important for an organisation to be ready before they embark on Patient and Public Involvement and Engagement (PPIE). Aurora outlines five steps to help teams assess their readiness for meaningful PPIE, illustrating a clear link to patient safety. When it comes to Patient and Public Involvement and Engagement (PPIE), readiness isn’t just a nice-to-have — it’s a safety issue. Without preparation, involvement risks becoming tokenistic, rushed, or disconnected from decision-making. This not only undermines trust, but can also mean that valuable insights are missed, leaving potential risks to patient safety unaddressed. Readiness is about creating the right conditions, so involvement adds real value. It signals to people with lived experience that their time and contributions matter, while also ensuring organisations are in a position to listen, act, and embed learning. The risks of not being ready include wasted time, frustration for all parties, and missed opportunities to prevent harm or improve care. Here are five steps to help teams assess their readiness for meaningful PPIE: 1. Clear purpose Before inviting people to be involved, organisations need to be clear on why. What is the purpose of involvement? How will input be used? If the purpose is vague, participants are left unsure of their role, and outcomes are less likely to have impact. Defining a clear purpose helps align expectations from the outset. 2. Leadership and accountability Meaningful PPIE requires more than goodwill — it needs leadership backing and accountability. Senior leaders must support involvement efforts, resource them appropriately, and be willing to act on the insights shared. Without this, PPIE risks becoming superficial rather than systemic. 3. Resources and support Involvement is rarely effective if it’s done on goodwill alone. Budgets, staff time, and accessible materials are essential. So too is support for participants, whether that’s covering expenses, providing training, or ensuring accessibility needs are met. Readiness means ensuring resources are in place before starting. 4. Inclusive processes Readiness also involves creating spaces and processes where diverse voices can genuinely contribute. This means thinking about practicalities — such as language, format, and accessibility — but also about culture. Are meetings welcoming? Are there mechanisms to ensure quieter voices are heard? Inclusivity is a hallmark of readiness. 5. Follow-through and feedback Finally, readiness means committing to follow through. Involvement is not complete until participants know how their input has been considered, what has changed, and what hasn’t. Closing the feedback loop builds trust and demonstrates respect for lived experience. Readiness sets the tone for whether involvement is meaningful or tokenistic. By preparing well, organisations not only show respect to those sharing their experiences but also strengthen safety by acting on insights that highlight risks and opportunities for improvement. Getting ready is the first step towards making PPIE a driver of safer, more effective care.

Aurora Todisco is a hub Topic leader for Patient Engagement. In this blog she explores how patient experiences can be a lever for change, and contribute to improvements in patient safety. Aurora provides guidance, suggestions and tangible examples to help encourage others to engage well with patient stories in order to have positive impact on care. Patient stories are more than just anecdotes—they are powerful tools that can help healthcare organisations understand the real-life impacts of care, spot safety risks, and drive meaningful improvements. When captured authentically and used thoughtfully, these narratives can connect engagement with patient safety, creating a loop where learning from experience leads to better care for all. Engaging meaningfully with patient stories Collecting patient stories isn’t just about asking patients to recount their experiences—it’s about creating spaces where they feel heard, respected, and valued. Staff can engage meaningfully by: Conducting structured interviews, focus groups, or storytelling sessions with patients and carers. Collaborating with patient advisory groups or lived experience networks to ensure diverse perspectives are captured. Observing care pathways alongside patients to see the system through their eyes. These approaches help organisations understand not just what happens clinically, but how processes feel for patients, highlighting gaps that data alone might miss. Patient safety risks of not listening Ignoring patient stories can have serious consequences. Safety incidents often occur where systems fail to recognise the lived experience of those receiving care. For example: Miscommunication between staff and patients can lead to medication errors or delayed interventions. Patients’ unique needs—such as sensory sensitivities, mobility challenges, or communication preferences—may be overlooked. Opportunities to prevent harm or improve service design are missed when staff rely solely on metrics and audits without incorporating experiential insight. By hearing patient voices, organisations can proactively identify risks, prevent harm, and design care pathways that reflect real needs. Examples of impactful use of patient stories There are many real-world cases where patient stories have transformed systems thinking and led to tangible improvements: Addressing health inequalities in advance care planning At Guy’s and St Thomas’ NHS Foundation Trust (GSTT), patient stories highlighted disparities in access to advance care planning across different communities. Feedback from patients and carers informed the Advance Care Planning Project, which tailored communication, decision-making support, and follow-up care to meet the needs of underserved populations. This project improved access to advanced care planning for South London communities, increasing patient engagement in end-of-life decision-making and supporting more equitable care outcomes. GSTT – Advance Care Planning Neurodiversity-friendly initiatives Stories from autistic patients directly informed South London and Maudsley NHS Foundation Trust’s (SLaM) Autism Strategy 2024–2029. Patient and carer feedback shaped multiple workstreams, including: Awareness and Training – staff training to improve understanding of autistic needs Service User and Carer Experience – adjustments to waiting areas, communication, and engagement Access to Healthcare – ensuring equitable access to services Diagnostic Pathway – improvements in autism assessment processes Treatment and Support – tailoring interventions to individual needs Autism and the Workforce – embedding autism-informed approaches across staff roles These changes were implemented across SLaM clinics, ensuring care pathways better meet the needs of autistic patients and improving their experience and safety when accessing mental health services. >> SLaM Autism Strategy 2024–2029 Joining up services Healthwatch Waltham Forest captured Sanjay’s story, highlighting the impact of fragmented services across emergency care, surgery, GP access, district nursing, and aftercare. His repeated admissions, missed diagnoses, and poor coordination between hospitals and primary care showed how system gaps created risks for both patients and staff. The story was presented to the Waltham Forest Health and Care Partnership and the North East London Integrated Care Board, resulting in practical recommendations: flagging recently discharged patients on GP systems for priority access and enabling patients to escalate issues quickly if community services like district nursing fail to respond. These changes aim to improve service coordination and reduce harm for patients navigating complex care pathways. >> Healthwatch Waltham Forest Annual Report 2022–23, page 15 These examples show that authentic storytelling isn’t just “nice to have”—it’s an evidence-based, system-wide lever for improvement across both national frameworks and local care delivery. Linking engagement and safety When organisations prioritise patient engagement through stories, they inherently strengthen safety. Patients and carers often notice hazards and inefficiencies before formal reporting systems do. By combining engagement and safety frameworks, healthcare teams can: Co-design improvements with patients. Monitor and evaluate changes from both safety and experiential perspectives. Foster a culture where staff see patient stories as integral to their work, not optional extras. Conclusion Patient stories are a bridge between human experience and organisational systems. When staff and leaders actively listen and respond, care becomes safer, more compassionate, and more effective. Involving patients in telling their stories is not just about engagement—it’s about learning, preventing harm, and creating sustainable improvements that resonate throughout the healthcare system. Share your insights What do you think about the role of patient stories in making safety improvements? Have you seen how lived-experience can shift thinking and systems for the better? What are the challenges, and what needs to happen to overcome them? If patient experiences were used more to design services, how would it make a difference? Share your thoughts below (register here for free first), or contact us at [email protected].