Catching up with… Miranda Scanlon Patient perspectives on research
Thanks for taking the time to talk to us Miranda
Thanks for the opportunity to talk a little bit about this important topic.
Please could you share some details of your background, and how you got involved in research?
I’ve been a kidney patient all my adult life and had a kidney transplant 17 years ago. There have been lots of points along my journey where I’ve needed to discuss my care with health professionals and make decisions. I’ve always been a researcher, with a PhD in biology and then later moving into health services research as a service user/patient representative. Joining Kidney Research UK has enabled me to champion the voices of patients more widely in research projects.
Your article shares personal opinions on the active role of kidney patients in decision-making in relation to their healthcare, known as ‘shared decision making’. Can you explain a bit more about this term, and why you think it’s so important?
I joined two kidney doctors, Charlie Tomson and Barny Hole, who were writing the article for a journal aimed largely at clinicians. I was very pleased to be invited to add my patient perspective to it.
As we set out in the article, shared decision making is a process where a health professional works together with a patient to reach a decision about their care, for example, choosing tests and treatments. The decision reached jointly will reflect the health professional’s knowledge and experience, together with the patient’s individual preferences, beliefs and values.
It’s important because patients are experts in their own lived experience of their condition. Patients may have different views from a doctor about what is most important to them and these need to be taken into account when making decisions about care. The idea that ‘doctor knows best’ is outdated: considering patients’ views alongside the evidence should result in the best decision for them. Being an active participant in their care has benefits for patients, with better satisfaction and confidence in their care.
What barriers do you think exist to this approach being used more widely? And, how do you think we can support healthcare providers to overcome these?
There are potential barriers on both sides. Some patients may prefer to put themselves entirely in the hands of their professional team, especially if they are worried that they may make the wrong decision for themselves. Some clinicians may feel that they do not have the necessary time, environment or skills to use this approach, or they may assume that they know what is best for their patient. Our article tries to address this to encourage health professionals to make the changes necessary to introduce this practice into their care and to reassure patients. Of course, patient demand for shared decision making as a natural part of a consultation will also help!
Thinking about research more broadly, please can you tell us a bit more about your involvement in research at Kidney Research UK? How would you suggest that other individuals living with kidney disease might get involved?
As Lay Advisory Group Lead, I’m lucky enough to get involved in research in different ways. One way is to encourage researchers to include patients when deciding on their research questions or designing their studies. This forms an important part of how grant proposals are assessed for funding at Kidney Research UK and patients are involved at all stages of the assessment process.
Talking with researchers at events such as Driving Discoveries or the Research Showcase evenings is another way to highlight the important of patients contributing their views to how research is conducted, be it clinical trials, discovery science or interviews with patient subjects.
As patient co-chair of the UK Renal Health Data Research Network, I’m also encouraging patient engagement in data projects. There is great potential to use data to improve patient outcomes, but it’s vital that sensitive health data is used in ways that patients find acceptable. Having researchers and patients working together on data use builds trust and confidence for the benefit of everyone.
What is your vision for the future of kidney patient care, and is there a message that you’d like to share with other patients?
Of course, the real vision is to end kidney disease, but until we are at that point, the need is for kidney care to be truly equitable, so that all people have access to the best care regardless of their levels of health literacy and their ability to advocate for themselves. This includes early diagnosis of kidney disease and the basic provision of care according to guidelines such as prescribing SGLT2i medication or treatments for anaemia.
Communication between health professionals and patients is key. Kidney patients are usually in it for the long term, so there are opportunities to build up levels of trust with their team which improve the quality of care and reduce the burden of kidney disease and its treatment.
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