Meaningful involvement in MND research ensures patient perspectives shape progress, making science relevant and compassionate.
The value of lived experience in research is well recognised, yet established frameworks for supporting patient involvement often do not address the distinct challenges faced by those with progressive, life-shortening conditions such as motor neuron disease (MND), also known as amyotrophic lateral sclerosis. This editorial accompanies the session ‘Exploring the experience of establishing a patient involvement initiative in MND’, presented by Natasha Ratcliffe (LifeArc) and Rachael Chandler (Oxford PharmaGenesis) at Patients as Partners EU 2026. Taking learnings from the LifeArc MND Insights Group, a collaborative patient involvement initiative developed by LifeArc and the Oxford PharmaGenesis Patient Engagement Team, we offer practical recommendations for shaping research partnerships with people who have progressive or life-shortening conditions.
The MND Insights Group was set up in 2024 to bring lived experience expertise to LifeArc’s MND Translational Challenge. The group met online every few months over 1.5 years to shape funding calls, inform research design and provide vital insights to ensure scientific progress reflects what matters to people affected by MND.
At the outset, we reviewed best-practice frameworks, academic literature and guidance on involvement in neurodegenerative conditions to help plan an appropriate, evidence-based approach. Crucially, plans were discussed with UK MND charities to gather feedback and ensure suitability. Through this, we developed an approach grounded in the needs of people affected by MND.
The group comprised five people living with MND and five bereaved caregivers. It was supported by two experienced co-chairs: a bereaved caregiver with extensive involvement in MND advocacy and a registered nurse with expertise in MND care and mental health.
Below we share five practical recommendations for implementing patient involvement with people affected by progressive, life-shortening conditions. For patient engagement leaders, this initiative demonstrates how to translate high-level patient involvement principles into responsive and effective practice adapted to community needs.
1. Prioritising emotional safety.
Creating spaces where people feel safe to share their experiences is always important, but especially when involving people affected by progressive, life-shortening conditions.
- Make time and space to get to know people. Before discussing research topics, offer participants the chance to speak informally and build connection. Cultivating trust takes time, so make sure you allow people to go at their own pace.
- Have facilitators monitor reactions and adjust the meeting’s pace and tone accordingly. If participants show signs of distress, meetings should be paused and breaks offered. Facilitators should also proactively check in during and after sessions, and signpost to appropriate support.
- Offer participants space for post-meeting reflection. Optional, unstructured discussion time at the end of meetings can help people to process conversations and gives people opportunity to talk more informally.
- Encourage facilitators to make time for post-meeting reflection. Debriefing calls offer them the chance to reflect openly on emotional or challenging discussions, share feelings and support each other.
2. Ensuring Compassionate and Adaptive Engagement
It’s important to be aware of potential sensitivities when discussing different topics. The following strategies help clarify roles, support participants and adapt discussions to individual and topic needs.
- Establish a shared purpose at the outset. Ensure there is clarity on people’s roles and what they are being invited to contribute to, and give them the opportunity to share what they need to enable their involvement.
- Inform participants of topics in advance so that they can decide if and how they wish to contribute. This is especially important for sensitive topics (e.g. disease progression, quality of life).
- Use small-group breakout rooms to ensure participants have opportunities to contribute.
- Consider appropriate group compositions for topics, based on people’s experiences:
- Mixed groups (patients and caregivers) can help to explore broad priorities and quality-of-life themes.
- Separate breakout rooms for patients and caregivers for difficult topics (e.g. disease progression, late-stage symptoms) mean that caregivers, especially those who have been bereaved, can contribute without worrying about upsetting people living with the condition.
- Individuals’ circumstances should be considered, giving thought to how hearing others’ experiences may affect an individual; this may be particularly relevant for people with recent diagnoses.
3. Using flexible formats for diverse communication needs.
Conditions affecting speech, mobility and hand function can affect people’s ability to communicate. Fatigue and cognitive difficulties also affect people’s engagement. It is crucial to be aware of how a condition can present, how circumstances can change over time, and to provide accessible options for contribution.
- Offer concise, plain-language pre-reading materials, covering the agenda and discussion points; send them well in advance to reduce cognitive load and support those using assistive technology.
- Support chat contributions during online workshops. Facilitators should read messages aloud and give written input equal value to spoken contributions.
- Be responsive to fatigue and speech difficulties. Avoid excessive follow-up questions if a participant is experiencing these; adapt break times accordingly and support the participant in stepping back from the conversation, providing a later opportunity for them to continue.
- Offer offline input in diverse formats (e.g. email, documents, voice notes, one-to-one calls) to minimise pressure and enhance flexibility.
4. Providing transparent and timely impact communication.
For people living with progressive, life-shortening conditions, prompt and transparent communication about the impact of their involvement is vital for respecting people’s contributions and supporting their engagement.
- Provide regular, timely, plain-language updates, describing how insights influenced funding decisions, research design and strategic priorities.
- This may help participants gain a sense of fulfilment and achievement by allowing them to see the difference their input has made, especially for conditions with high unmet need.
5. Collecting ongoing feedback to keep involvement inclusive.
Consultation with patient and community groups is essential during the planning stages, but ongoing consultation with those involved is equally important to ensure continued alignment with participants’ needs and to avoid barriers to involvement.
- Discuss initiative design with participants upon recruitment, inviting feedback to tailor programmes to individuals’ needs.
- Offer regular opportunities for structured and unstructured feedback. This enables real-time changes and adaptations, which are especially important for progressive conditions.
The LifeArc MND Insights Group demonstrates how to adapt involvement practices for working in partnership with people affected by progressive, life-shortening conditions. Alongside established involvement frameworks, the key principles we recommend are flexibility, empathy and holistic consideration of individuals. These learnings and the human experience behind them will be explored at Patients as Partners Europe 2026, with the aim of equipping stakeholders with guidance to develop practical, meaningful involvement programmes.