How to Help Empower Cancer Patients

James Coker
Senior Editorial Assistant, European Medical Journal
[email protected]
@EMJJamesCoker

One of the themes that ran through the recent ‘War on Cancer’ event, organised by The Economist, conducted on 21st November, was problems in communication that frequently occur in the healthcare service, with a particular emphasis on the NHS in the UK. Speakers at the event, both on stage and during one-to-one interviews with the EMJ, argued that this can substantially affect the care of cancer patients. It is also the underlying issue that prevents patients being empowered and able to take more control over the decisions made about their health, something believed to be crucial for improving outcomes.

The conference, now in its third year, was made up of various panels of healthcare experts which focussed on the experience and care of cancer patients. With that in mind, the opening section, entitled ‘The Keynote Panel: Setting out the Challenge—the Patient View’ was composed of two former cancer patients who represent major patient organisations: Ms Ali Stunt, Founder and Chief Executive, Pancreatic Cancer Action, and Mr Sarunas Narbutas, President, Lithuanian Cancer Patient and Co-founder, Youth Cancer Europe. Both described the communication issues that they and other patients had experienced during their cancer diagnosis and treatment.

Outdated Technologies
Ms Stunt began by stating her belief that some of the communication methods used in the NHS can inhibit the communication that takes place. “Why in 2017 are doctors writing to each other to refer patients? Why can they not accept emails? And why do they still have fax machines: who on earth sends a fax these days? Technology has moved on and our doctors are still writing letters!” she exclaimed. She went on to outline the lack of involvement she felt she had in regard to her treatment, conveying her sense of helplessness as multidisciplinary teams behind the scenes effectively made decisions on her behalf. Mr Narbutas then raised a number of practical issues that prevent easier and more modern communication methods from being properly utilised, mostly in relation to his home country of Lithuania, such as legal barriers and data protection.

Later that day, during an interview the EMJ undertook with Ms Victoria Thomas, Head, Public Involvement, National Institute of Clinical Excellence (NICE), she too expressed her concerns at the unnecessary delays caused by communication methods in the NHS, which she described as being “so far behind the rest of society” in this regard, pointing out that people are able to exchange sensitive information securely over the internet with ease for other services that they use: banking and shopping for example.

In addition to improving efficiency, Ms Thomas also believes that digital technology can engage patients more, informing the EMJ that NICE are currently looking into using skype or video conferencing to help patients unable to attend their committee meetings to still interact, even if they are not physically in the room. This is potentially something that could be utilised for consultations in the NHS as well.

She also believes that giving patients more control over their own records can further improve efficiency and patient empowerment, as well as help overcome data protection issues. Referring back to a previous era, she argued: “If we can trust pregnant women to hold onto their maternity notes for the duration of their pregnancy why can’t we trust everybody to have their notes, so that the notes follow the patient?” She continued: “But the care, the notes, the infrastructure, the bureaucracy doesn’t follow the patient and I think there’s in built inefficiency in that.”

Communication Skills
Mr Narbutas stated his belief that there was generally inadequate communication training for doctors, as well as the lack of time patients get with physicians at consultations about their cancer. Ms Stunt agreed, describing the difficulties she had in understanding what was being told to her when she was diagnosed with cancer, and subsequently had to seek clarification, or even “interpretation” from a clinical nurse specialist.

Ms Thomas also outlined her concerns about the way doctors are trained to communicate with their patients, and the lack of attempts to involve patients in decisions made about their treatment. “I worked with a junior doctor once and she was telling me about the communication skills training that she had gone through as a doctor. She told me that all of her communication skills training had been about persuasion, how to persuade the patient to take a particular course of treatment, rather than listening and learning what the patient had to say. So there’s something about how we frame communication training for doctors that’s really important,” she commented.

Ms Thomas acknowledged the fact that being able to fully gauge the needs of patients is difficult for primary care physicians, given their workload and the typically short time frame within which consultations take place. However, she argued it is vital all doctors acquire the skills to elicit the greatest concerns of the patient very quickly. The consequence of not establishing this information is that quality of life concerns, such as fatigue and returning to work, that are usually of very high priority to patients, are often overlooked, with doctors tending to focus on clinical measures like life expectancy.

Ms Thomas also informed us that NICE have been commissioned to produce guidance on good practice in shared decision making, to be published in a few years’ time, that should provide recommendations to doctors about communication with patients. “It’ll be a companion piece to the guidance we’ve done on things like patient experience and medicine adherence and those broader cross-cutting topics,” she explained. “I’d be very surprised if there aren’t recommendations in that about what training is needed for doctors to support them to have these conversations where they can elicit what people really want to get from their treatment and care so that’ll be a really interesting development.”

Empowering Patients
Education is key to enabling those patients that wish to, the opportunity to contribute to the decisions made about their health. “If people really don’t want to engage with treatment then I don’t think we should make them, but anyone who shows even the vaguest flicker of interest in engaging with the options available to them, with the system more generally, then we should be capitalising on that,” said Ms Thomas.

Increased patient knowledge is therefore of paramount importance, it is vital that healthcare professionals are able to take extra time to explain the condition to the patient. Ms Stunt, on the Keynote Panel, described how she undertook a lot of personal research to educate herself about her condition, and the treatments available for it, but acknowledged that this avenue is not necessarily available to all patients, for various reasons. “I think we’ve got a lot of work to do to inform patients better, to really empower them to ask the right questions to their medical team,” she added.

Patients who are empowered, and able to play a key role in decisions about their healthcare, are more likely to have better outcomes, according to the expert speakers at War on Cancer. Mr Narbutas pointed out that adherence, a big issue in treating cancer, as well as other conditions, is much more likely to occur in those patients who are well educated about the disease, and understand the benefits of the particular therapy. Additionally, Ms Stunt stated her belief that empowered patients are more likely to seek out and participate in clinical trials, in addition to improving the patient’s state of mind. “I just know, from talking to patients and their families, that those who are much better informed and empowered will definitely do better,” she commented. “I think there’s a psychological element to that because patients feel some kind of ownership of their disease if they are actually doing something. The worst thing in the world is to be diagnosed with something and you just feel like you have no input.”

Navigating the System
Another big topic consistently brought up throughout the event is the difficulties patients frequently face when navigating a complex health service structure, which are a contributing factor in the lack of patient involvement and the amount of decisions that take place behind the scenes. Ms Stunt said that patient organisations, such as hers, were having to help patients navigate their way through the system, and suggested the idea of there being someone within the health service, purely to help patients in this respect.

“First of all, we’ve got to make sure that it is simplified so that we are able to see through the fog and reduce the layers of complexity that don’t need to be there.” She added: “And I think it’s not just us patients who are getting confused: I think there are some healthcare professionals that are also a little bit confused about where to go and where to refer patients.”

There are certainly a number of areas that need to be improved to empower patients and increase the efficiency and effectiveness of the health service in the UK. Greater use of digital technologies will assist with this. Doctors having longer consultations with patients to explain more thoroughly the issues surrounding their condition will not be easy, given the pressures on the health service. However, a greater emphasis on communication skills during their training is something that should be brought in, that also focusses on finding out individual patient needs quickly. Methods, including an individual within the health service providing full-time help for patients to navigate the system could also be implemented. These are steps that can be taken to help put patient centricity at the centre of the health service.

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