Patients must be at the heart of the NHS – and of innovation
In the third instalment of the NHS Innovation Accelerator (NIA) series sharing research and real-world insight, Dr Amanda Begley explains why health innovators must adopt the core principles of the NHS Constitution, ensuring that the patient is at the heart of everything they do.
The NHS Constitution, first published in 2011, holds as one of its core principles: “the patient will be at the heart of everything the NHS does”. And so it should be for innovation. Patients should be at the heart of the development of innovations, and with the outcomes they seek to achieve, in order to radically improve the way in which the NHS engages with, supports and cares for people. This could be through new treatments, more accessible and effective care, or more efficient processes that free up resource to reinvest into patient care.
It is widely recognised that patients play a powerful role in successfully developing and scaling innovations – as well as benefiting from them.
The recognised roles for patient involvement in health innovation include:
- Paying close attention to patient experience to identify opportunities for innovation
- Inviting direct feedback to learn how to make an innovation successful
- Using patient stories to make a more compelling case for adoption of an innovation
- Leveraging spread of innovation through patients actively demanding change to address unmet need
These all hold true in much of the NIA experience. In addition, NIA Fellows offer three key insights for how patients can actively support the adoption and scaling of innovation in the NHS:
- Intrinsic – not just instrumental – involvement of patients can accelerate engagement with potential adopters
- Involving patients beyond design and evaluation can drive more sophisticated scaling strategies
- Scaling strategies involving both patients and clinicians – rather than either in isolation – is key to creating sustainable demand for innovation
Intrinsic – not just instrumental – involvement of patients can accelerate engagement with potential adopters
When it comes to patient involvement, we typically talk of innovators consulting patients and inviting them to feed back on their innovations. Implicit in this approach is the belief that innovators and patients are separate groups with separate roles. By blurring this boundary, NIA Fellows have accelerated their engagement with potential NHS adopters.
Three NIA Fellows developed their innovations in direct response to their own experience as a patient, service user or carer. They began not by observing an opportunity, but by living it. Take Sleepio, for example. Peter’s own insomnia alongside the lack of non-medical treatment options inspired him to lead the development of Sleepio[1], a digital ‘CBT for sleep’ platform that empowers people to take control of their sleep difficulties and develop skills to tackle them. Patients need not only be consulted about innovation, they can lead and design it. We have seen that openly sharing this personal journey can deeply engage potential adopters, giving real authenticity to the innovation and seemingly reducing the need for traditional marketing style pitching.
Showing a real commitment to involving patients also engages potential adopters. At the beginning of developing DrDoctor, Tom Whicher and his team spent 6 months in an outpatient clinic, talking to people and testing basic minimum viable product versions of what has subsequently become the DrDoctor platform. This thoughtful, ethnographic approach to understanding challenges, the DrDoctor team’s ability to solve them through excellent co-design, and the relationships that were built with local partners, created demand from the site in which they were doing their research to be DrDoctor’s first adopter. Committed work with patients to deeply understand their needs is in itself an adoption mechanism, and models a way of creating change within the NHS that truly fulfills the Constitution’s principle to place patients at its heart.
Involving patients beyond design and evaluation can drive more sophisticated scaling strategies
For NIA Fellows, their journey on the accelerator begins with feedback from patients on their scaling strategies. NIA patient representatives and charities give their time to help Fellows understand how users can effectively inform and direct their scaling strategies.
This has proved extremely effective even for those Fellows where real time user feedback is challenging. For example, patients’ benefit from Peter Young’s (PneuX) and Maryanne Mariyaselvam’s (Non-Injectable Connector and Wiresafe) innovations whilst in intensive care – where it is not possible to engage in real time with what alternative versions of their care might otherwise be like. Peter and Maryanne have engaged with patient representatives within the NIA and through a Citizen’s Senate to understand the impact that these innovations (or lack thereof) can have on patients. From this insight they have honed a compelling case for the importance of improving safety and reducing avoidable harm for patients, particularly when they are critically ill. The strength of this narrative has played a crucial role in getting their innovations on to the Innovation and Technology Tariff.
Patients can also shape scaling strategies by being given core leadership roles for an innovation – moving beyond the more traditional role for patients as advisor or champion. Craig Newman has chosen to have patient representation on the governing board of EpSMon to ensure it upholds its mission to improve the experience of people with epilepsy and keep patients at the forefront of development decisions, even under business pressure. The patient representative on EpSMon’s governance board has veto power, so every significant decision requires their sign off. Patient leadership is built into the fabric of this innovation – going beyond periodic consultation and feedback. This has resulted in significant re-design of EpSMon and its scaling plan, in recognition that people with epilepsy do not necessarily engage with a marketing strategy focused on ‘reducing mortality’. Instead they connect with solutions that can offer them improved control over their seizures.
Scaling strategies involving both patients and clinicians – rather than either in isolation – is key to creating sustainable demand for innovation
Some NIA innovations can be accessed directly by patients themselves, either for free (e.g. BrushDJ, OWise, Join Dementia Research) or via private purchase (e.g. AliveCor’s Kardia, Sore Throat Test and Treat, Sleepio). In these cases, one route to scale is to market the innovation directly to the public. This has delivered some success with, for example, spikes in downloads following national newspaper coverage (e.g. BrushDJ) and in sales following TV coverage (e.g. AliveCor’s Kardia).
However, innovators who run aggressive awareness campaigns targeting the public in the absence of parallel engagement with the NHS do so at their peril, as such strategies risk disengaging patients and potential NHS adopters. All NIA Fellows recognise the central importance patients place on the relationship with their clinicians and the wider NHS. Putting patients at the heart of their scaling strategies therefore includes respecting and enhancing this relationship. Furthermore, as Francis White (AliveCor’s Kardia) recently explained at the Innovation Expo 2017, NHS adopters – as accountable professionals – must go on a change journey before accepting new ways of working. As such, NHS clinicians and commissioners can respond cautiously when asked by a patient about an innovation that they are not yet well informed about.
Early media coverage of Sore Throat Test and Treat (STTT) – driven by The Telegraph’s own coverage of the NIA 2016 launch (estimated reach of 34.5 million) – resulted in considerable interest from the public, commissioners and clinicians. The overwhelmingly positive response from the public has driven the offer of a private STTT service via a number of community pharmacy sites. In addition, clinicians and commissioners were largely positive, actively seeking further information on the evidence, and more recently this interest is starting to translate into securing initial NHS test sites. However, a small number responded immediately and publicly in a negative manner, which – although based on incomplete and incorrect information published by the press – created significant work for Fellow Malcolm Harrison. A significant amount of time and energy had to be dedicated to simply address misplaced concerns regarding the next phase of the innovation’s development within community pharmacies.
Patient demand in and of itself is rarely sufficient – clinicians and commissioners need to respond to the demand and be partners in the adoption of an innovation. Clinicians are often required to adopt an innovation in order for a patient to benefit from it (for example, Episcissors-60 must be used by a trained clinician, in order to improve outcomes for women during childbirth). As such, scaling strategies need to appeal directly to patients and in parallel build demand within and through the NHS. Francis White has taken a partnership approach to building demand for Kardia, actively seeking involvement of patients through the support of the Atrial Fibrillation Association (AFA) and also building – through existing personal contacts and via the NIA – a growing network of clinical advocates. Every time a patient purchases AliveCor’s Kardia through the AFA, a proportion of the purchase cost is donated to the charity. This association with the AFA benefits the innovation, and helps builds Kardia’s relationship with influential clinical and charity leaders in the field. Other Fellows have sought similar endorsement from the NHS, for example, by registering their apps on the NHS App Library, and seeking ‘NHS approved’ status. Whilst patients can be the active purchaser and user of innovation, scaling strategies must recognise that innovations always have two users in the UK: patients and the NHS. Creating demand from both is key to effective engagement and sustainable growth.
The integral role of patients in innovation goes far beyond the traditional expectation of consultation and championing, and into the more embedded and intrinsic function of leading, governing and informing scaling strategies for innovation. So, to really succeed in the NHS, health innovators must also adopt the core principles of the NHS Constitution, ensuring: “the patient is at the heart of everything they do”.
We’ll be sharing more insights from the NIA soon – next time focusing on how business models can be developed to ensure sustainable supply of an innovation, and meet the demands of the system.
This is the third blog in the NIA series developed with the Innovation Unit. Read the first two blogs here:
Innovation supply and demand: never the twain shall meet?
Join the conversation on Twitter @NHSAccelerator using the hashtag #innovationspread
[1] https://www.sleepio.com/blog/2012/02/14/the-sleepio-story-so-far-by-peter-hames-co-founder/