Putting the person in personalised care: what patients say about the HNA

Personalised care and support planning (PCSP) supports people to manage the impact of cancer, leading to improved experience of care, quality of life, and reduced health service use [1].

PCSP is built on coproduction, recognising that care and health outcomes are generated through the shared work of patients and clinicians [2].

Holistic assessments, such as the Holistic Needs Assessment (HNA), personalise care by offering patients the opportunity to work in partnership with clinicians to identify the needs and goals that are most important to them.

The National Cancer Plan for England commits to offering a holistic assessment of needs and a personal care plan to all people diagnosed with cancer [3]. This study set out to understand how HNA and PCSP work in practice, and how they could work better.

Funded by THIS Institute and hosted by King’s College London, the aim of the improving personalised care and support study was to understand how PCSP, in the form of the HNA, works (or not) from the perspectives of people living with colorectal cancer and their clinicians, and to co-design improvements.

The study focused on the HNA/electronic-HNA (eHNA) at diagnosis because this is a focus for many services in terms of meeting key performance indicators.

The research followed colorectal cancer teams across three NHS Trusts as they completed the HNA/eHNA process, from service offer to personalised care and support planning meeting. While the intervention is tailored differently (in terms of process, timing, and modes of delivery) across teams, it typically involves:

• Each patient being invited to complete a paper (HNA) or web-based (eHNA) tool to identify and rate concerns in different areas of their life (the concerns checklist), and to answer six ‘what matters to you’ personalised care questions.
• Responses being used to support patients and clinicians to structure a personalised care and support planning meeting (either face-to-face, by telephone, or video call) that focuses on what is important to each patient.

The study followed ten patients who were each filmed at three time points to capture their experiences of:

• using the HNA/eHNA tool
• the personalised care and support planning meeting with their clinician
• reviewing footage from the previous two videos and providing feedback on their HNA/eHNA experience

Clips from the patient videos were then edited into one short film and shared with each patient’s paired clinician and their wider team to allow them to reflect on real-time practice, identify good practice, and consider areas for improvement [4].

Three iterative co-design workshops were then held with patients, clinicians, and wider stakeholders at each NHS Trust site to co-design improvements [5].

Insights from patients and clinicians

• Value gap: The value that patients place on PCSP contrasted with clinicians’ views of the consultations as bureaucratic.

Clinicians explained that watching the patient films challenged their perception of practice and made them reconsider the value of the HNA/eHNA as something meaningful and more than a tick-box exercise.

• Empowerment: Patients described co-producing health as enabling them to be active participants in their own care.

Patients valued the HNA/eHNA process because it offers a holistic approach, providing time to talk, space to think and ask questions, and the opportunity to consider what’s next.

Patients spoke about how the opportunity to co-produce health by using the HNA/eHNA enabled them to be active participants in their own care.

Patients felt they were in charge of their own story, deciding how much information to share and discussing needs at their own pace.

• Team approach: The HNA and PCSP provide a way to foster joined-up care.

Patients felt they were more than just a number in the system, and that the HNA/eHNA process highlighted a team approach and a way to join up different components of care. One patient described how their HNA/eHNA experience had provided an anchor, demonstrating how the process can help establish a sense of safety, hope, and trust in a time of adversity and uncertainty.

Room to improve: What patients and clinicians say

Alongside these positive findings, patients and clinicians identified three consistent areas where the HNA and PCSP process falls short:

• Low uptake: Many patients do not take up the HNA or PCSP, and some were unclear about its purpose or relevance to them.
• A language gap: Clinical terminology such as “holistic assessment” does not always resonate with patients, who are more likely to understand the process as being about their overall wellbeing.
• Timing of the offer: The HNA is not always offered at the right moment. Being offered the HNA at diagnosis can be overwhelming. People may need it later, when they are more able to engage, and reminders would help.

Listening to people’s stories made these challenges tangible. The co-designed resources aim to bridge this gap, to better inform people about the benefits and process of the HNA, and to bring it closer to the people it is designed to serve.

Patients also highlighted that the HNA and PCSP process requires ongoing personalised conversations as their needs often change over time.

A focus on metrics and on the HNA as a target risks it becoming a one-off intervention. Balancing personalised care with organisational demands, and ensuring workload capacity supports the person rather than the system, remains a key challenge.

To support personalised care, it is important to understand how people make sense of their cancer experience. Some patients felt that the PCSP conversation could have been used more effectively to help them process their cancer experience and adjust to life with cancer.

Patients felt that the focus on concerns meant the opportunity for goal setting was overlooked, and that the wording of the ‘what matters to you’ questions was difficult to understand and could be improved.

The ARC framework offers a way to underpin HNA conversations, reframe concerns as priorities, and introduce more structured goal setting [1].

Developed from personal narratives of living with and beyond cancer, ARC identifies three overarching themes:

• Adversity: realising the impact of cancer and treatment
• Restoration: managing and coping with new challenges
• Compatibility: reflecting on how cancer has affected life [6]

The co-design phase of the study translated these findings into practice. Working with patients, clinicians and wider stakeholders, seven resources were developed to improve understanding of the HNA, demonstrate its value, and make PCSP more accessible.

The suite includes:

• Single-sided visual guide:

  Promotional material written by patients and clinicians, in plain language, that highlights how the HNA and PCSP personalise care.

  Download PDF guide

• Tri-fold leaflet:

  Designed for use in clinics and by clinicians (including the wider MDT) to introduce the HNA, or as a reminder where the timing of the first HNA offer was not right.

  Download PDF leaflet

• Poster:

  For display on clinic and office walls as an ongoing prompt and reminder to offer or re-offer the HNA.

  Download PDF poster

• Animation:

  Designed for display on screens across primary and secondary care settings, the animation reinforces the value of the HNA and acts as a re-offer tool for patients who may not have engaged with it the first time. It empowers patients to proactively ask their care team for an HNA and PCSP conversation.

   

   

• Clinician-facing pocket conversation guide:

  A digital pocket guide that puts the ARC framework into practice. Structured around Six Steps to Supportive Conversations, it supports clinicians in having more effective, person-centred PCSP conversations. It also gives permission to take the time needed for quality interactions and is illustrated with real patient narratives.

• Clinician-facing training resource and digital flipbook:

  An accessible training tool built on the conversation guide, with added voiceover narration. Ideal for clinicians new to the HNA and PCSP process, or those seeking a refresher, it offers a self-directed way to build confidence and consistency in delivering person-centred care conversations. Access digital flip book.

• Future PCSP service blueprint:

  A forward-looking planning tool for service development. 

The resources in this suite are free to use and have been designed for everyday clinical use across primary and secondary care settings.

Please get in touch if you would like access to the full MP4 files for use on local clinic screens, websites, or other platforms.

The HNA is more than an assessment.

It is the beginning of a conversation that puts the person at the centre of their own care.

We offer a range of free resources and services to support healthcare professionals in delivering best practice personalised cancer care.

If you are a health or social care professional

Macmillan has launched a new, free membership for all health and social care professionals who interact with or support people with cancer, who are not a Macmillan Professional. Access trusted learning, practical guidance and professional support to help you confidently support people affected by cancer. Register today

Macmillan resources

• Join Macmillan's personalised care and support planning network to share experiences and discover great resources to learn more about implementation.
• Sign up for e-learning modules which explore the principles of having personalised conversations with people to develop a care and support plan that reflects what matters most to them. Modules include ‘What matters to me’, ‘Compassionate People centred conversations’ and ‘motivational interviewing’.  
• Resources to support people living with cancer with their health and wellbeing.

• You can also find more in-depth learning about the importance of supportive conversations leading to a care plan, that is agreed and shared with the person with cancer, from Guy’s Cancer Academy - “Personalised care planning for people with cancer”. This includes videos of people with cancer talking about how they experienced the conversations with professionals.

Further reading

Making the case for integrated personalised care

Acknowledgements

The improving personalised care and support study is funded by a Healthcare Improvement Studies (THIS) Institute fellowship award. We would like to acknowledge and thank THIS Institute for the funding and support provided to ensure this study was made possible.

We would also like to thank patients and clinicians who participated in this study, and who generously gave their time to reflect on and share their experiences of personalised care and support planning in practice.

We also thank members of the study advisory group and PPI group for their valuable advice, and Nifty Fox Creative for their expertise in visual storytelling and their contribution to the co-design team.

References

1. Le Boutillier, C., et al. (2023) Improving personalised care and support planning for people living with treatable-but-not-curable cancer. BMJ Open Quality, 12:e002322. https://doi.org/10.1136/bmjoq-2023-002322
2. Batalden, M., et al. (2016) Coproduction of Healthcare Service. BMJ Quality & Safety, 25:509–517.
3. Department of Health and Social Care (2026) National Cancer Plan for England: delivering world class cancer care. London: DHSC.
4. Iedema, R., Carroll, K., Collier, A., Hor, S-Y., Mesman, J., Wyer, M. (2019) Video-Reflexive Ethnography in Health Research and Healthcare Improvement: Theory and Application. Florida: CRC Press.
5. Robert, G., et al. (2015) Patients and therapists as co-designers of healthcare services. BMJ, 350, 1–6.
6. Le Boutillier, C., Archer, S., Barry, C., King, A., Mansfield, L., Urch, C. (2019) Conceptual framework for living with and beyond cancer: A systematic review and narrative synthesis. Psycho-Oncology, 28(5), 948–959. https://doi.org/10.1002/pon.5046