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Patients’ experiences of home haemodialysis technology

Key points

  • We have interviewed patients who use haemodialysis in their own homes to find out about their experiences, showing that the design of future machines needs to better take into account specific things that people find particularly difficult with the process or with fitting dialysis into their lives.
  • We have, as a result, developed specific recommendations for their future design of home haemodialysis equipment.
  • We have presented the findings to groups of professionals responsible for kidney care, as well as in blog posts for patient groups and carers giving them strategies for managing technology use.

Background
Many people suffer from long term, often incurable, illnesses - chronic conditions like diabetes, kidney disease and heart disease. There are a variety of technologies that help manage these illnesses either in hospital or at home. For example, people with chronic kidney disease have to regularly undergo haemodialysis which involves being hooked up to a machine that cleans their blood for 4 to 5 hours. Some patients are trained and given the medical equipment to do their own dialysis at home. This is a complicated procedure, setting up and using a complex machine, that the patient, or a relative, typically has to complete three times a week. If they get it wrong the patient could be harmed.

Understanding what it is like
Within CHI+MED, we have studied the experiences of people with chronic conditions (particularly diabetes and chronic kidney disease) when using technologies to manage their own health. We have also investigated the challenges they face in ensuring their own safety.

With respect to kidney disease, we visited 19 patients in their own homes, observed them setting up or completing a dialysis session, and interviewed them about their experience of home haemodialysis. We found that home patients value the freedom and autonomy that home haemodialysis gives them: they want to live their lives fully despite their illness. While people pay attention to their safety, they also adapt the way they use the technology to fit their lives and their home context. Efficiency and comfort are also important! For example, one patient set up the machine outside on their veranda as that was a more pleasant place to pass the time. However, the machine was not designed to be used outside and this meant they had to use a heater to keep the machine at its correct operating temperature. Sometimes, such adaptations have safety implications however.

We also discovered the things the patients found difficult. This includes specific parts of the process. For example, they have to open and close a series of clamps on the tubes the blood flows in and out of the machine. Each has to be opened and closed at the right time in the process. It was easy to forget to open and close some of them, with the design of the machine doing little to help them remember. Sometimes things went wrong with the machine or the process and the patients had to troubleshoot the problems, which they also found difficult, with little immediate support when they needed it.

Improving future designs and processes
It is clear from this work that the design of future machines needs to take into account the things that people find particularly difficult, and also be designed to fit their lives and their priorities as far as possible. We have developed a series of specific recommendations for the design of the machines including:

  • an easier mechanism for clamping lines and making sure all lines are clamped or unclamped as needed through the dialysis programme;
  • better support for troubleshooting when anything doesn’t work as expected;
    easy intervention by an untrained person in case of emergency;
  • real-time remote monitoring and remote intervention by technicians in case of emergency;
  • easy data and information exchange between patients and clinicians.

We have also identified strategies for patients and carers to use to help them safely manage the way they use home technology, such as:

  • being diligent about disinfecting and cleanliness;
  • devising a way of organising supplies so that it is obvious when something is running out, or if something is missing (or hasn’t been used when it should have been);
  • avoiding distractions while setting up dialysis;
  • getting a family member to check the set-up;
  • anticipating problems with power supply (e.g. during a storm) or with water supply (e.g. when someone was about to do a load of laundry) and avoiding dialyzing then;
  • giving a key to a neighbour (or leaving it on the windowsill to throw down to a neighbour) in case of emergency;
  • keeping a mobile phone within reach, with a list of emergency numbers.

Sharing our findings with clinicians, patients and manufacturers
As well as presenting our work in traditional research outlets we have presented our findings to a variety of the professionals and patient groups that it affects.

We were invited to contribute to the “Yorkshire and the Humber” Shared Care website, where we have written about the experience of learning to do dialysis at home, and also on strategies for staying safe on dialysis. This has led to the Yorkshire and Humber team and the British Kidney Patient Association working together to facilitate patients exchanging the resilient strategies they use for managing their care, to ensure that day-in-day-out everything goes right.

We were invited to talk at the Renal Association’s 7th Annual Home Therapies Conference in Manchester. It is an educational meeting for professionals concerned with kidney diseases and care, including physicians (nephrologists), trainees, nurses, technicians & managers, caregivers, primary care staff and commissioners. Following on from this, we have been invited to write for the Journal of Renal Nursing. We were similarly invited to talk at a Washington summit on Healthcare Technology in Nonclinical Settings. Organised by the US regulator (the Food and Drug Administration) and the Association for the Advancement of Medical Instrumentation, it brought together leaders from the medical device industry and regulators with clinicians and researchers. Our work was featured in the summit report which outlined priority issues arising from the summit. It particularly highlighted the point from our work that “People don’t want to criticize their device. It might appear that they’re not competent.” This work was also part of Ann Blandford’s keynote talk at the MHRA inaugural meeting on human factors for medical devices that brought together senior leaders across UK organisations linked to patient safety with academics and patient groups and at the Institute of Ergonomics & Human Factors Healthcare Special Interest Group’s meeting on Human Factors in Healthcare in London, also for those responsible for providing, managing or ensuring the safety of both patients and healthcare providers.

Improving future studies
A further result from this work concerned the way such studies are conducted. Even if you are focusing on technology design, when you visit people in their homes it can be difficult to plan what to take note of and what to discuss with them. We used ideas from the theory of “Distributed Cognition” to design our studies. It sees cognition as something more than just in a person’s head but extending to the ways people interact with each other and the ways objects in the world are used to represent information. This allowed us to see a larger picture of how and why equipment was manipulated, such as the way some patients set out everything they needed in particular ways in advance. We also drew on “resilience engineering” which focuses on what people do to ensure things normally go right, rather than the occasions they go wrong. In turn, the studies have helped us to reflect on those theories and their scope. The theories draw attention to important features of the machine and people’s strategies for using it (as illustrated above), but risk overlooking other important considerations such as people’s emotional responses (e.g., “panicking” when something unexpected happens) or how they can continue to enjoy life while managing their illness.

Future work
The work we have done in CHI+MED has raised the profile of home dialysis: both making this serious health condition more visible in the healthcare human factors community and also drawing attention to the user experience of home haemodialysis technology within the renal community. It has highlighted the need for further research, with and for patients, their families, healthcare professionals, and technology developers, to:

  • design home technologies that further improve the lives of patients and their families;
  • shape systems of care that support patients at proportionate cost; and
  • facilitate patients learning from and supporting each other (e.g., through social networking)

See also ...
Evaluating a new dialysis system for children
Developing distributed cognition for healthcare (coming soon)

Publications
Rajkomar, A., Farrington, K., Mayer, A., Walker, D., & Blandford, A. (2014). Patients' and carers' experiences of interacting with home haemodialysis technology: implications for quality and safety. BMC nephrology, 15(1), 195. Listed as highly accessed.

Rajkomar, A., Blandford, A., & Mayer, A. (2013). Coping with complexity in home hemodialysis: a fresh perspective on time as a medium of Distributed Cognition. Cognition, Technology & Work, 1-12.

Noble, P., & Blandford, A. (2013). You Can’t Touch This: potential perils of patient interaction with clinical medical devices. In Human-Computer Interaction–INTERACT 2013 (pp. 395-402). Springer Berlin Heidelberg

Noble, P. (2015) Resilience Ex Machina: Learning a Complex Medical Device for Haemodialysis Self-Treatment. In Proc. CHI 2015 (short paper). (Honorable mention: top 5% of short papers)

Rajkomar, A., Blandford, A., & Mayer, A. (2012). Situated Interactions of Lay Users with Home Hemodialysis Technology: Influence of Broader Context of Use. Proc. HFES.

Rajkomar, A., Blandford, A. & Mayer, A. (2014) Studying Patients’ Interactions with Home Haemodialysis Technology: The Ideal and The Practical. In D. Furniss et al (Eds.) Fieldwork for Healthcare: Case Studies Investigating Human Factors in Computing Systems. Morgan & Claypool Synthesis Lectures.

Key People
Ann Blandford, Paul Noble, Atish Rajkomar

Acknowledgements
This work would not have been possible without the active participation of clinicians and people with experience of doing home haemodialysis.