Putting the person in personalised care: what patients say about the HNA
People who are supported to participate in their own health and care have improved patient experience. Holistic assessments, such as the Holistic Needs Assessment (HNA), personalise care by offering the opportunity for patients to work in partnership with clinicians to identify needs and goals that are most important to them. Electronic versions (such as the eHNA) allow for digital personalised care and support. This blog is an opportunity to demonstrate Macmillan’s engagement with research particularly in terms of listening to the experiences of patients and staff and making healthcare improvements.
Making sense of the HNA: Reflecting on patient experience
A study that explores the experience of the HNA/eHNA is underway. Funded by THIS (The Healthcare Improvement Studies Institute) Institute and hosted by King’s College London, the aim is to understand how personalised care and support planning in the form of the HNA/eHNA works (or not) from the perspectives of people who are living with colorectal cancer, and their clinicians. The research will go on to co-design improvements with patients and clinicians. The study focuses on the HNA/eHNA at diagnosis (as its starting place) due to the need to place restrictions on the research sample.
The research is following five colorectal cancer teams (across three NHS Trusts) as they complete 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 are used to support clinicians to structure a conversation (the 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 has, so far, followed nine patients. This has involved videoing each patient at three time points to capture their experience of i) using the HNA/eHNA tool, ii) the personalised care and support planning meeting with their clinician and iii) to review footage from the previous two videos and to gather feedback on their HNA/eHNA experience. Clips from the patient videos are 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, to identify good practice and to consider areas for improvement (Iedema et al., 2019).
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.
Re-thinking the HNA: Making a difference to patient experience
Initial findings from the study show that the patients value the HNA/eHNA process because it offers a holistic approach, provides time to talk, space to think and ask questions, and to consider what’s next. Patients spoke about how the opportunity to coproduce health by using the HNA/eHNA had enabled them to be active participants in their own care. Patients felt that they were in charge of their own story, in terms of how much information they chose to share, and that they were able to discuss their needs at their own pace. They 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 provides a structure for establishing a sense of safety, hope and trust in a time of adversity and uncertainty.Room to improve: what patients say
To support personalised care, it is important to understand how people make sense of their cancer experience. Some patients in the study have felt that the personalised conversation could have been used to better help them to process their cancer experience and to adjust to life with cancer. As an example, they suggested a clearer explanation of the ‘what matters to you’ questions and greater focus on goal-setting would ensure the conversations focused on addressing their concerns.
The ARC framework is one way to underpin HNA conversations, reframe concerns as priorities, and allow for more structured goal-setting. This framework was developed from personal narratives of living with and beyond cancer and identifies three overarching themes: Adversity (realising the impact of cancer and treatment), Restoration (managing and coping with new challenges) and Compatibility (reflecting on how cancer has affected life) These themes are displayed in the graphic below.
Ensuring the HNA is an ongoing conversation
Patients in this study felt that the HNA/eHNA process requires ongoing personalised conversations as their needs often change over time. A focus on metrics and on the HNA/eHNA as a target risks that it becomes a one-off intervention. There is also a need to balance personalised care with organisational demands and to manage workload capacity so that there are multiple opportunities for HNA/eHNA conversations dependent upon the needs of the person, not the system.
How Macmillan Cancer Support can help you
Macmillan offers a range of free resources and services to support healthcare professionals in delivering best practice personalised cancer care.
- Join Macmillan’s Learning Hub - by creating a free account, you can explore a range of practical and trusted resources to support you in your work, including:
- Personalised care and support planning network - use this online community to share experiences and discover great resources to learn more about implementation.
- Learning resources for those using Macmillan’s electronic Holistic Needs Assessment. This includes the User Guide (also available on the My Care Plan platform) and a full range of ‘How to’ videos. Understanding the range of options for recording the progress of the assessments, monitoring, and managing them is key to ensure that your data is correctly recording the conversion of assessments to locked care plans.
- 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.
- Macmillan’s eHNA has a Patient Portal so that the individual can return to see their own care plan, and all care plans that have been agreed and shared with them from different hospitals or other organisations. As a professional you cannot access their view of the Patient Portal, but you can see our helpful 'how to video' which shows you what they will see.
- 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
Acknowledgements
The eHNA/HNA study is funded by a The Healthcare Improvement Studies (THIS) Institute fellowship award. We would like to thank Guys & St Thomas’ NHS Foundation Trust, Imperial College Healthcare NHS Trust, and Northern Care Alliance NHS Foundation Trust for taking part in this study.
References
- 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.
- 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
- Le Boutillier, C., Jeyasingh-Jacob, J., Jones, L., King, A., Archer, S., Urch, C. (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