Healthcare’s latest curative potion is a potent mix. A splash of AI, dashes of data and lashings of patient input. If this sounds less than scientific, that is because the order of these key ingredients, the exact ratios and the ideal conditions for efficacy are still, at times, in the realms of alchemy rather than application.

They bubble away in a cauldron of possibilities that are creating huge hope for patient pathways that deliver improved patient outcomes and optimise health resources. Translating that promise into hard practice is the towering challenge.

The patient voice has been at the heart of healthcare for some time, from the design R&D projects through to clinical trials and diagnostics and delivery, but enhanced possibilities for improved care are opening through digital tools and patient-derived data.

They are concentrating a microscope on patient pathways with a stream of real-time insights – an opportunity too good to be missed. But experts believe these will only be realised by loosening the grip on clinical assumptions and harnessing the deep, practical insights from patients.

Su Smith, Director of Origins, the patient-focused specialist agency, said: “Assumptions are often made by those that are designing patient pathways, whether that is healthcare professionals (HCPs), hospital administrators or pharmaceutical representatives, about what it might be like to live with a condition, be treated for it or what a patient may be able to do. The reality is often quite different.”

“Patient insights are hugely valuable in creating pathways and it has been shown that patient engagement from an early perspective can help improve a range of care aspects including clinical trial outcomes, which clearly has a massive financial benefit.

‘Unless you include patients in the design of that pathway, you can overlook things that are really important to them’

“They can also help with adherence in terms of patients wanting to stay on drugs or needing to stay on drugs. This is a gateway to massive commercial benefits as it helps you get the right strategy and systems in place from the beginning and understand what your potential sales look like because you will have developed something that is right for the patient and should also help HCPs do their jobs better.”

Studies are increasingly showing that digital capabilities are generating improvements across a swathe of metrics, from the seemingly mundane travel arrangements of participants attending clinical trials to fresh condition insights driven by deep data analysis.

Digital health tools that generate real-time data on when and what dose of a medication was taken are the Hollywood output adorned with transformative savings for healthcare systems but the more prosaic intelligence they deliver on patient capabilities can be equally impactful, contends Smith.

“A contact may be logged as 15 to 20 minutes’ clinical time once a month and that on paper does not sound like very much but when you ask patients about their experience you discover it actually takes up their entire day. If it can be done remotely or more locally then there is potential to change the pathway in terms of how they experience it as well as the cost implications from freeing up beds and clinical time,” she said.

“Understanding how treatment impacts patients beyond that appointment is critical. We have to understand their whole world to understand how we can make it better for them and create more efficient healthcare systems that function better for HCPs as well.”

Origins assists pharma and biotech companies in understanding and involving patients across product life cycles, and is currently working on a number of projects with groups of patients to design a clinical trial. Their input has been pivotal in developing protocols that are resulting in transformative outcomes.

“The interesting element was that the pharma company and HCPs did not want to burden patients so built in a monthly contact but the patients wanted more so they could provide more information about how their condition was impacting their lives on a daily basis rather than an episodic contact,” she added.

“The patient voice improved the trial and that is why patients have to be at the centre of creating pathways, no matter what technology is available.”

Smith also advises that technology should be used when a clear purpose has been identified and to avoid a ‘dash for digital’ simply because it offers new capabilities. “It won’t be right for every patient or every condition but when applied with consideration it can enhance patient pathways,” she added.

Tina White, Principal Clinical Consultant at Wilmington Healthcare and a former Integrated Care System Programme Director at a major NHS Trust, agrees that listening to patients and putting their experiences and insights first is the gold standard for patient pathways.

“I worked in the NHS for more than 30 years and, as clinicians, there is a tendency to think we know best, but if you really listen to patients’ concerns and understand where things are challenging for them you can make the changes that will have the biggest impact for them and their patient experience.

“Patient involvement is not only necessary and the right thing to do, it is a valuable commodity for pharmaceutical companies. We worked with one company that wanted to develop an app and remote monitoring and went direct to the patients to discover what would give them the confidence to use the technology and which features they would want. This gave the initiative the best chance of working and delivering better patient outcomes.

“The huge positive here is that the public is more aware of the role of digital in their health. Clinicians and managers who may have been more suspicious of a pharma organisation’s intentions now have more understanding because people worked so closely during the pandemic and found there are benefits to working across boundaries.”

Wilmington combines core expertise across pharma, MedTech and the NHS with cloud-based technology, data visualisation tools and access to senior leaders and policymakers, and specialises in developing strategies that support patients and industry.

“We can be the conduit between the NHS and pharmaceutical companies as we can draw on data to provide the evidence as to what best practice would look like,” added White. “We can take a patient pathway and bring clinicians and patient groups together to consider what an optimal pathway would look like. By doing this, we can create a pathway that leads to earlier diagnoses and discharge from hospital and see the positive financial potential.”

White also views the balance between data and personal patient experiences as the crucial factor in effective patient pathways. “You cannot have one without the other,” she observed. “Data is the hard fact, the evidence, but there is no taking away from what the patients’ personal experiences look like; they are the ones that know exactly how it is impacting their lives and how the system works for them. They have to be included in conversations around pathways.

“In the past, it was the clinicians who redesigned services but that has changed and the patient has a bigger say. In the NHS, part of the interview process for senior executive roles usually includes a patient group or panel, which shows how important their voices are.”

A pressing challenge is to ensure that patient data is accessible to influence performance across pathways but White believes much work is needed to make the case on the basis of trust and to solve technical issues so that systems synchronise.

Digital Europe, the trade association representing digital transformation industries, found that only 43% of member states could use cloud services as part of their infrastructure while 64% had national rules for sharing Electronic Health Record data cross-border. Its Digital Decade report stated: ‘Patient-centric e-health services will empower patients to communicate more easily with their physicians and healthcare providers, and to share feedback with innovators and policymakers.’

‘Patient insights are hugely valuable in creating pathways and it has been shown that patient engagement from an early perspective can help improve a range of care aspects’

Improving diversity and reducing inequalities is also a prime sector focus and White sees insights from data and digital tools as key enablers of better healthcare. “We saw those inequalities and variations in health only too clearly during the pandemic,” she said. “The data allows us to see where people are struggling to access treatments, whether that’s geographically or because of their age, gender or ethnicity. We can then delve deeper to find the reasons why and how best to remedy them.

“There are some fantastic areas of innovation from community nurses using iPads to clinicians using digital speech recognition and, if we can open our minds to a lot of this technology, we can create much more inclusive, equitable and effective patient pathways.”

Alix Critchley, Group Strategy Director at Evoke, agrees but added the caveat that technology must not push healthcare towards a more impersonal future and celebrations around the potential for AI should be tempered until the risk of bias can be neutered.

“The advent of new technology brings a really exciting opportunity to design pathways around patients and what’s right for them,” she said. “But the temptation to hide behind a screen must be resisted. I’ve seen it in hospital wards with clinicians interacting with the bedside technology rather than the patients in front of them.

“I also feel that, although AI is a great tool for analysing masses of information, we must ensure that the data it is trained on does not come with inherent bias. These tools can make a difference to patient pathways, but listening to patients themselves is absolutely critical. Unless you include patients in the design of that pathway, you can overlook things that are really important to them.”

Evoke, an Inizio company, is a full-service marcomms platform that has the mantra to ‘make health more human’. Critchley highlighted studies in publications The Lancet and Social Science & Medicine stating that empathetic care can improve the quality and speed of a patient’s recovery. The research illustrates why technology and compassion need to work in harmony.

“It shows that the more empathetic doctors are, the faster patients will recover, which makes it even more important to listen to patients,” she added. “We must also be really aware of diversity issues as, unfortunately, solutions have often been designed around too narrow a pool of patients. Clinical trials often, sadly, exclude women or ethnic minorities and we can learn from patients how to combat this.”

Critchley has worked on a range of projects where the patient voice has helped reshape pathways for the better, including in a terminal respiratory condition where their research discovered a tendency for bad diagnoses to be delayed. “They weren’t doing this to make their lives easier, but because they were not used to giving that diagnosis in that type of setting and they wanted to be sure,” she said.

“This resulted in patients searching through the internet while they waited three or six months for their next appointment and we discovered that 90% of the information they accessed was inaccurate. We did an extensive research programme and co-created a solution with patients and oncologists and it led to the time between full diagnosis to treatment being shortened by 12 months. In a life-limiting condition, that is incredibly significant.”

This is a real-world example of how patient data, experience and collaboration can combine to create effective patient pathways. Critchley added: “The data tells you something but not everything and that’s when you need to go and talk to people and discover what is going on.

Some people believe in listening, but not data and others believe in data, but not listening. Really, it has got to be a good combination of both. You’ve got to be able to investigate and analyse data, understand its limitations, search for what it’s not telling you and listen to the patients.

“Using technology to take care of routine, time-consuming clinical tasks will allow doctors to spend more time listening to patients and caring for them with better patient pathways that are more human and work for everyone.

“There is an opportunity to transform the whole system with healthcare companies and providers working in partnership with local communities to deliver care around patients rather than around centralised systems.

“Truly putting the patient at the heart of their pathway will transform people’s lives.”

References are available on request.