The experiences of patients, carers, and clinicians in the later stages of life

The development of the collaborative health information system was based on the following user needs that we identified through user research with those living with life-limiting conditions and the people and clinicians involved in their care.

What do people with life-limiting conditions need towards the end of life?

People with life-limiting conditions need to feel valued and heard.

When you are no longer able to be active in the way you once were, or continue with your work, you are already managing a shift in your identity. This can be exacerbated when you start to be seen as a "condition" or as one part of a body (for example, as a lung by a lung specialist). Adjusting to the changes in your life as you navigate through the new perceptions and labels given to you means that feeling valued and heard is so important. This is about power and visibility, about feeling listened to and understood.

Everybody seems to be an expert on what you should be doing yet I'm the expert in my condition.

- Sheila, living with COPD

Health isn't that my lungs aren't working today, it is also how I'm feeling.

- Mark, living with COPD

People with life-limiting conditions need administrative tools that have been designed from their perspective

This includes wanting to know what is coming up in terms of appointments, visits or treatment; better ways of recording important information that can get lost in panic; or taking the right medication at the right time. As one person said, "You can track an Amazon parcel, why can't we see when carers are going to turn up." This was in the context of his wife whom he had cared for at home and during the last year of her life and they'd had many different carers coming in and out. Coordinating this care coming into their home, with their own lives, had taken up far too much of his time. Tools to help with recording, planning, coordination and visibility would be useful.

I panic when I am listening and then I don't hear it all, so I need a better way to record conversations or make sure I remember to have someone with me.

- Amrit, living with heart failure and Parkinson's Disease

People with life-limiting conditions need to be able to record their preferences over time

If someone's got as far as doing an advanced care plan, that's great, however it is often done in one moment of the day, and can feel like what you commit at the time is set in stone. People need to feel that they can plan ahead or record their preferences in a way that reflects the reality of their day-to-day lives and their changing feelings and emotions. Whatever people use to express their preferences needs to be flexible and adaptable over time.

I have to live differently and adjust to things all the time which means what I want and what I don't want changes too.

- Duncan, living with COPD

What do clinicians need so they can treat and care for people with life-limiting conditions?

Clinicians need an information system that reflects the constant change and volume of their work.

This includes ways of documenting information about their patients that reflects the changing nature (both physical and emotional) of health conditions over time. And ways of receiving timely information as notifications within the daily flow of information they need to manage.

Toward end of life, planning is a process, not a stamp in time. Every six months the resident gets a review with me about not just end of life but their ongoing care needs. I ask them questions like, "Are you still happy with this? Is this still what you want?" Lots of times you do see changes in the plans.

- Mark, care home manager and nurse

The amount of coordination it takes and the nature of the patients they get at the hospice, not only complex but they are at a stage of their illness when it is quite unpredictable. We need flexibility to adapt templates for our own kind of note taking.

- Jo, palliative care nurse

Clinicians think information sharing and balancing power is a good idea too

In our interviews with clinicians they all expressed a need for information to be shared more effectively across systems and services but also for their patients to feel a different kind of ownership and access to it. Whilst there was broad agreement about this in theory, how it should happen, what it would look like and how it would work was hard for people to imagine.

Patients and carers should have access to all their records. It's not an IT problem, it's an information sharing problem. We have this nonsense about information sharing: "It's MY information"... no, it's not your information, it's the patient's.

- Mike, out of hours GP

There is an undue worry about patient confidentiality. Caldicott Two added another principle so there are now six. It was that you should share information if it is in the best interest of the patient. There is a silo thing that it is my information and information is power. I think patients should have the right to see it and take it around with them but they shouldn't have the right to edit it because that is dangerous. Patients don't have a hang up about this, about their data; professionals do.

- Ruth, GP and chair of Clinical Commissioning Group

Clinicians need information about their patients in a consistent way, and the validity and quality of that information is important

Clinicians want to know the provenance of the records that they may be basing their decisions on. This is important for assessing the validity of the information but also in providing more consistent care for their patients in building on what has been done before. The way that forms and documents are designed needs to actively encourage quality in note-taking.

It is such a fragmented workforce now that it means there is less trust and less quality assurance. If I am to take on board what someone else had reported I would like to know who they were and be able to get a sense of their judgement.

- Alison, consultant in palliative medicine

The purpose of the notes? The fact that the person after me, the person might be seeing someone else after me so we need continuity. We might need to go back to what we decided.

- Ruth, GP and chair of Clinical Commissioning Group

Of course, the thing is: the whole notes depends on the quality of the notes that are written so you can have an amazing system but if you have team members who don't write very good notes or write it in the right place, then you are stuck really.

- Jennie, physiotherapist

Clinicians need priority to be given to particular pieces of information at different moments in time.

There is an increase in the quantity of information that clinicians receive, and through digital technologies it is starting to be delivered in a more continuous flow. Because of this there's a need for greater precision in how information is divided up into small, useful and timely chunks.

What I want to know is what has changed about a person.

- Jo, palliative care nurse

The ideal in healthcare is having the time to really get a holistic view of someone but you don't get that time very often. With the economic climate and the shortness of resources and time, you need to be able to make a decision quickly. You need to be able to get a snapshot of what has gone on for someone and what is most important to them now. You need to listen to today's story or the week's story, not the whole life story.

- Mike, our of hours GP

Clinicians need their information to link up between people, services and locations

Holistic treatment for people with life-limiting conditions towards the end of life will never happen until there is better integration between all the services that they touch through their condition. To be able to design and plan for this type of care, clinicians need to have a view of what is being delivered by whom, and where. Bringing in different expertise at different points of need is essential for the best care but this is an ongoing challenge when the information that each intervention generates is so fragmented. Without this kind of shared system of information, resources are also wasted as services and interventions are duplicated.

What we really need is an integrated system where everybody who needs to know something knows.

- Valerie, hospice lead nurse

We want our systems to be joined up completely. We need a better integration with secondary care. We need to be able to access things across the board. It's calling out for something that is attuned to all the stakeholders: out of hours, secondary care, primary care, and most importantly, patients and their carers.

- Mike, out of hours GP

It's the interaction between the different settings (physical settings) which my CCG has been struggling with for about two years. That would be more than just general practice and A&E sharing, it would also be with mental health trusts, community trusts.

- Alison, consultant in palliative medicine

I want to know what data was collected by whom. I would also like information on who the person has seen, been cared for by, been treated by, so that I don't duplicate resources. I might commission a physiotherapist to work with the patient without knowing that they had seen a community physiotherapist.

- Alison, consultant in palliative medicine