The Loop | Issue 9 | April - June 2023

The Loop 9

Racism is an overlooked challenge

Strategy for reform

Guerrilla self-care

4. 6. 10. 14. 16. 20. 22.

Editorial

Improving perioperative care for older people

Racism is an overlooked challenge to UK healthcare services

Enabling social prescribing to thrive by supporting link workers

Achieving digital transformation during challenging times

How technology is vital to intelligent disease management

Effective ways to combat the NHS staffing issue

26. 36.

Recent advancements in the rare disease landscape

How do we unlock workforce potential through holistic people-centred planning?

Strategy for reform

Cutting DNAs and empowering patients with AI tech Guerilla self-care

CEO: Jon Wilks, Chairman: Roy Lilley, Strategic Advisor: Shane Tickell, Director of Social Care: Adam Purnell, Membership Manager: Emma Caton, Operations Manager: Jade Maloney, Social Media Administrator: Rachel Jury, Operations Administrator: Charlotte Joseph, Digital Content Consultant: Luke Farmer

Wild garlic litters the forest path floor, bird song is on the air from first light and, if you grow them too, your tomato plants are beginning to tickle your sense of anticipation. The equinox has occurred, and it is my favourite time of year.

JON WILKS

Across health and social care, I wish that I could write that the same sense of renewal and optimism is in similar bloom. Unfortunately, what feels like a nuclear winter persists; a darkness, cold and desperation that hangs like a pall across the sector and has done so since

As the camelia in my garden continues to demonstrate its brilliant pink colours (despite what feels like incessant rain), we are reminded that Spring has sprung, and the annual sense of renewal is upon us.

Chief Executive

EDITORIAL

the first covid lockdown of March 2020 thrust all of you into the national spotlight. Industrial action, impossibly long waitlists, utter confusion around workforce, influenza and the mental and physical exhaustion of what you have all had to endure means that the stagnant fug continues to suffocate.

I raise my hat to every one of you who has been obliged to get out from under your duvet every day and, grimacing, come to deliver your best in your place of work despite these circumstances. I have seen and heard at first hand the angry testimonies from many of you about what you feel is the legacy of years of bombast, thoughtlessness and political expediency from those who preside over government policy. Factor in the senselessness of regulatory inspection and I am amazed that we have a workforce at all!

There is, of course, a chink of light. The light is called hope and it is worthy of our coaxing and nurture. So here is my hope for the Spring season as applied to health and social care. I hope that:-

• A workforce plan worthy of the definition emerges from the Chancellor’s office and is good enough to address long term decline.

• All parties connected to the current wave of strikes reflect on the futility of silence and the harm that stand-offs do to those whom we are privileged to care for.

• Our social care innovators’ People Plan for Social Care receives the attention that it deserves in the corridors of power and the united support of all those who care.

• Bullying and intimidation as components of leadership are consigned to the bin and that those who perpetrate such behaviour follow.

• How we regulate and ensure quality across health and social care is the subject of an open, honest and evidence-based discussion to redesign our approach.

There we are, there’s my 5 ‘hopes’ –chinks of light all and, with my last breath, I’ll advocate for all of them. Will you join me?

Please enjoy this new issue of The Loop.

Improving perioperative care for older people

Increasing numbers of older patients are having surgery in the NHS, with one-in-five over-75s predicted to undergo surgery annually by 2030, at a cost of £2.7 billion.

Jugdeep Dhesi, Consultant

While surgery has many benefits, it is also true that older patients often have other healthcare issues and face a higher risk of perioperative complications. For patients this can mean poor experiences, resulting from multiple referrals and disjointed care. For healthcare systems, this is seen in higher health and social care expenditure, resulting from late cancellation of surgery, prolonged hospital stay and high readmission rates.

Perioperative medicine for Older People undergoing Surgery (POPS) was first established at Guys and St Thomas’ NHS Foundation Trust to improve clinician- and patient-reported outcomes for older people undergoing surgical procedures. The POPS model comprises a geriatric-medicineled, multidisciplinary and multispeciality service, providing Comprehensive Geriatric Assessment (CGA) and optimisation of patients. This is delivered for both emergency and elective surgical patients across all surgical subspecialties. In practice, this takes the form of holistic assessment, optimisation and shared decision making in a one-stop specialised POPS clinic, followed by ward-based care delivered through co-management between POPS and surgical teams. In the elective patient group, two thirds of patients have a new diagnosis made, three quarters have medications changed, and lifestyle advice is provided in over half of patients, with individualised perioperative plans and

shared decision making documented in almost all. 2

This streamlined approach reduces the need for multiple pre-operative appointments and onward speciality referrals, and avoids last minute cancellations.3 Crucially, patients undergoing CGA and optimisation have fewer complications, shorter length of stay, and a resulting decrease in healthcare utilisation cost. 4 A similar approach is delivered for patients admitted as emergencies on surgical wards, with comparable results across surgical subspecialties.

Adapting to new challenges

The Covid-19 pandemic has resulted in ever increasing waiting lists and delays to surgical treatment. Addressing this challenge requires new and innovative approaches; CGA-based POPS services can form a key component of the new model of care with their proven clinical- and costeffectiveness: 3

1. Employment of POPS allows a reframing of waiting lists as preparation lists. POPS facilitates early preoperative assessment, medical optimisation and prehabilitation (through lifestyle modification, exercise, nutrition, and psychological preparation). It reduces the need for multiple referrals (eg anaemia clinic, GP review

Dr Harriet Hall, Junior Clinical Fellow, POPS, Guy’s and St Thomas’ NHS Foundation Trust

Professor

Geriatrician, POPS, Guy’s and St Thomas’ NHS Foundation Trust

of hypertension or a parallel prehabilitation service) and in turn negates the need for an individual patient to be on multiple waiting lists.

2. A POPS approach supports early and effective shared decision making. Holistic CGA-based assessment helps patients weigh up risks and benefits to make the decision that is best for them in the context of co-existing health issues. Following POPS assessment and in collaboration with their clinical team, 1-in-7 patients opt to be removed from surgical waiting lists. 2

3. Using a POPS approach helps flow through primary, secondary and community services. The team help to identify patients suitable for day surgery, addressing current variation across the country in day surgery rates. POPS also improves flow through the hospital by ensuring early decision-making regarding need for level two and three care, and reduces late cancellations of surgery, length of stay and readmissions.

Next steps for managers and leaders

The POPS@GSTT team have supported hospitals in the NHS and internationally to establish their POPS services adapted to the local context. To scale this up across the NHS, an NHS Elect POPS Network has been established. Within the last 18 months, two cohorts totalling thirteen NHS Trusts have completed the 6-month programme, and have implemented sustainably funded POPS services adapted to their local context.

The programme consists of a range of individually tailored learning and development events led by national clinical and improvement experts. Monthly core events, webinars and masterclasses focus on key topics e.g. setting up a POPS service, application of QI techniques to support change and the approach to measurement and understanding your data. Access is also provided to vital online resources such as the POPS toolkit, as well as opportunities to build links with other participating sites.

As managers and leaders coordinating the delivery of NHS care, IHSCM members are uniquely positioned to drive the adoption of these clinically- and cost-effective services.

Recruitment is now underway for the third POPS Network cohort. Any interested organisations should contact jugdeep.dhesi@gstt.nhs.uk, networksinfo@nhselect.org.uk or visit www.POPSolderpeople.org

1. Fowler, A. J., Abbott, T. E. F., Prowle, J., & Pearse, R. M. (2019). Age of patients undergoing surgery. The British journal of surgery, 106 (8), 1012–1018. https://doi. org/10.1002/bjs.111481

2. Shahab, R., Lochrie, N., Moppett, I. K., Dasgupta, P., Partridge, J. S. L., & Dhesi, J. K. (2022). A Description of Interventions Prompted by Preoperative Comprehensive Geriatric Assessment and Optimization in Older Elective Noncardiac Surgical Patients. Journal of the American Medical Directors Association, S1525-8610(22)00643-0. Advance online publication. https://doi.org/10.1016/j. jamda.2022.08.009

3. Partridge, J. S. L., Moonesinghe, S. R., Lees, N., & Dhesi, J. K. (2022). Perioperative care for older people. Age and ageing, 51 (8), afac194. https://doi.org/10.1093/ageing/ afac194

4. Partridge, J. S., Harari, D., Martin, F. C., Peacock, J. L., Bell, R., Mohammed, A., & Dhesi, J. K. (2017). Randomized clinical trial of comprehensive geriatric assessment and optimization in vascular surgery. The British journal of surgery, 104 (6), 679–687. https://doi.org/10.1002/ bjs.10459

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Racism is an overlooked challenge to UK healthcare services

The structural nature, influence, and prevalence of racism in the UK’s health and social care sector have been overlooked and downplayed as a mere “diversity management” issue for a long time.

Sadiq Bhanbhro, Senior Research Fellow, Sheffield Hallam University

As of 2021, even it was not fully acknowledged; for example, the Commission on Race and Ethnic Disparities report concluded that institutional and structural racism is no longer an issue for Britain. Yet, the Covid-19 pandemic has exposed and further exacerbated racial inequities at all levels. Amid the pandemic, adding injury to insult has been the killing of George Floyd, magnified racism further by social unrest in response to the murder.

The Workforce Race Equality Standard (WRES) report (2022) shows that 22.4% of staff working in NHS trusts in England are from black and ethnic minority backgrounds. However, racism, discrimination, harassment, exclusion, bullying, and other incivilities remain pervasive challenges for the staff from black and ethnic minorities. Since 2015, NHS trusts have been required to report activity and progress around key indicators in standards on race and disability. The WRES report shows some progress, for instance, in appointing senior managers from black and minority ethnic groups. On the other hand, bullying, harassment, exclusion, and unfair scrutiny experienced by staff from ethnic minority backgrounds have increased.

The WRES report confirms the findings of our study, “nursing narratives: racism and the pandemic”, where hundreds of ethnic minority participants working in frontline health and social care roles shared shocking stories of racism at work. The project aimed to explore and understand the stories and experiences of healthcare staff from ethnic minority backgrounds during the pandemic and in their working lives.

We conducted a questionnaire survey and qualitative interviews with nurses, midwives, and other healthcare staff. Three hundred-eight respondents completed an online survey, and 45 people participated in the narrative interviews.

Our findings report that racism is prevalent in the health and social care sector and is usually unreported. It impacts ethnic minorities and migrant staff working in NHS at all levels. In the case of reporting to the author that 77.3% of respondents who complained about racism said they were not treated fairly. Incidents of racism were not individual and isolated; it was a culture that permeated daily practice. Our survey findings revealed that 59% of the survey respondents had experienced racism during their working lives, making it difficult to do their job; thus, 36% had left a job.

The study highlighted the greater risks and exposure to the harm of staff from ethnic minority groups during the pandemic, i.e., 52.6% of the participants experienced unfair treatment in the pandemic concerning either Covid deployment, PPE, or risk assessment provision.

Our research underscores that the endemic culture of racism is a persistent challenge to the UK’s health and social care sectors; thus, it must be recognised and called out. It is time for critical scrutiny of the status quo concerning inclusion, diversity, and equity measures in the NHS workforce.

Enabling social prescribing to thrive by supporting link workers

The importance of supporting the social prescribing workforce as the service gains more recognition.

Jennifer Neff, Former Community Development Worker and Managing Director of Access Elemental Social Prescribing

As a former Community Development Worker working in some of the most socially deprived neighbourhoods, I am passionate about social prescribing and the impact this can have on communities.

As we face challenges across health and social care with regards to long waiting lists, a growing population with unmet social needs, and an overburdened workforce, social prescribing (SP) has become a crucial way to ensure those that require support, but don’t need to be seen by a clinician, can be empowered to improve their health and wellbeing in their local community.

For the service to thrive and evolve (for example, beyond primary care into other care settings) it’s critically important for people to acknowledge the crucial role of link workers. Without them, SP can’t exist.

Being experts in recognising which services can benefit people and referring them to the right activity, they ensure the process of SP is seamless. They support clients by co-developing personalised health and wellbeing plans which direct them to the support available, measure impact, and track progress.

And whilst it’s promising to see that SP is now widely considered an effective intervention, and recognition for link workers is growing, there is still a long way to go. There needs to be greater investment into training, upskilling, and providing career development to ensure link workers feel empowered, valued

and supported - allowing them to offer the best SP support possible.

In 2020, the NHS’ Workforce Development Framework allocated a specific budget for the training and development of SP link workers, which has been fundamental to its success. However, from 2023, this framework bundles link workers into a wider sub-group, along with care coordinators, and health and wellbeing coaches. This means they are at risk of being overlooked and lacking adequate funding to support their professional growth.

There are also added pressures on link workers, such as not having access to the right digital tools, lengthy administration processes, and very few resources to be able to find locally available activities for their clients.

That said, there are some positive developments being driven by individual organisations. For example, this year, Access will be paying a year’s subscription fee for 40 link workers to join the National Association of Link Workers (NALW). The NALW is a vital association for link workers where they can work collaboratively to develop their skills, connect with others and share learnings to innovate across social prescribing.

And collectively, these types of investments can play a significant role in supporting link workers and enabling SP to continue to thrive, at a time when health and social care services are under such intense pressures.

Achieving digital transformation during challenging times

The role of digital transformation in the NHS as a key enabler to support patients across Integrated Care Systems and improve clinical outcomes have been well documented.

Kieran Hughes, Executive VP and Vice President of Europe, Nordic Consulting

For example, NHS England’s Frontline Digitisation programme aims to level-up and scale-up digital capabilities to ensure health and care staff have access to information when it’s needed, supporting them to deliver care efficiently, effectively and safely and reduce variation.

However, recent cuts in NHS England’s technology budget, which is now worth less than £1bn, will inevitably cause concern when it comes to implementing Electronic Patient Records (EPRs) to meet the government’s 90% target. What’s more, these plans won't succeed without an effective workforce strategy, which is still due to be published by government. So, given these financial and workforce challenges, how do you as a manager, know what to do next?

At Nordic we’ve been involved in transformation projects with providers of all sizes and at different levels of digital readiness. Here’s our suggestions for tackling these challenging circumstances.

1. Prioritise based on circumstances – a trust or healthcare system taking its first steps in clinical transformation should try to focus on digital strategy and implementation services. More mature systems, that have already embraced a digital strategy and implementation, should focus on getting return on that investment and optimising the EPR.

2. Overcome the ‘tech risk fear’ – Tim Ferris recently commented on the significance of tech fear in preventing change. Nothing is more important to the success of a transformation project than the engagement of end users in its design –this vital buy-in will help overcome the fear. Where possible, go to the frontline!

3. No one size fits all – the big bang

approach to deploying an EPR solution might be right for some providers, but it isn’t for everyone. Best of breed, home grown or something in- between might be the better option – work out what’s right for your trust/ system. Start with a plan or by identifying goals and choosing an approach which will help you to meet them.

4. Identifying what’s fit for purpose - there's a vast array of options available and finding the right solution for your specific needs can be hard. Utilising resources like NHS England’s new Who Does What framework is a great resource. It provides guides around pathway transformation and lists the digital services and products available.

5. Good programme governance – this is particularly important when working with other trusts, for example as part an ICS and convergence plans. Clear programme governance with delegated authority from the board is key to ensuring clinically led improvements to the EPR.

6. Utilise sharing platforms – there’s lots of examples of best practice from other leaders and managers on valuable sharing platforms like the NHS Futures EvidenceBased Library, NHSE digital playbooks and the Academy of Fabulous Stuff.

7. Consider working with a support partnerany system would find it hard to achieve all this without an experienced partner to help accelerate digital transformation and ensure its sustainable. Digital investments need to be fit for purpose so consider a partner who understands your specific needs and can provide the right training and knowledge sharing during and after implementation. Your partner can help as the plan and business case are being developed, make recommendations on programme governance, and provide even- handed facilitation when multiple organisations are collaborating.

clinical, financial

operational needs and

Use data to inform your care, predict outcomes and improve the health of your population.

Managers, clinicians and health authorities around the world benefit from our value-driven, community-wide approach. Discover how we could help you by visiting our population health management page.

Paul McGinness, CEO, Lenus Health

How technology is vital to intelligent disease management

In England, around 15 million people have a long-term condition.

Among these, heart failure, chronic obstructive pulmonary disease, asthma, diabetes and kidney disease are the most common.

They account for half of the top 10 reasons for an emergency admission and 70 per cent of total inpatient bed days.

The insidious burden of chronic disease has been growing for decades draining resources, expanding health inequalities and multiplying costs. In 1990, healthcare accounted for 5 per cent of the UK’s GDP. Today, it is around 12 per cent of GDP and almost half of UK government spending. There is no end in sight to healthcare expenditure without making changes. Current approaches to diagnosing and managing patients with long term conditions remain unsatisfactory. For example, COPD is known to be one of the costliest inpatient conditions treated by the NHS at around £2 billion each year. According to the National Institute of Health and Care Excellence, one in eight emergency hospital admissions is for a patient with COPD.

Multimorbidity, which refers to having more than one condition, is also a growing issue with a projected two-thirds of adults aged over 65 expected to be living with multiple health conditions by 2035. In line with the ageing population, healthcare spending would need to increase exponentially to even maintain today’s precarious standards.

As with many other industries, technology can transform expensive services into affordable goods. Digital models of care can join up services and provide access in new ways to create seamless pathways across care settings. The course-correcting solution for chronic disease lies with technology. Better data structuring and application of artificial intelligence (AI) in direct care will give clinicians the tools they need

to provide care proactively. These unprecedented demands will begin to subside as patients with chronic disease are kept well out of hospital. A recent study by NHS Greater Glasgow and Clyde examining the effectiveness of a co-designed digital service model for the management of COPD, uncovered valuable insight into how digital enabled home care for COPD may be used to maximise the impact of hospital at home spending, especially by taking a longer view of virtual ward initiatives.

Used across the NHS in Scotland and now launched in Hull University Teaching Hospitals NHS Trust through a recent SBRI award, the Lenus COPD Service is clinically evidenced remote monitoring technology that effectively uses data to introduce clinically actionable, AI derived, risk prediction scores. These predictions are being trialled as part of an NHS Artificial Intelligence in Health and Care Award to further help reorientate the management of COPD patients to a proactive and preventative model.

Perhaps in 50 years we might look back at economic costs and the way care teams work and be shocked at the level of reactivity and lack of guideline-directed pathway automation. There is no shortage of healthcare data being generated today but how it is understood and best utilised for clinical uptake is vital to changing the current trajectory of chronic disease.

Rayhan Abdullah Zakaria, Chartered MCIPD

Effective ways combat the NHS staffing issue

Opinion of an HRM researcher.

I love the NHS and it saddens me when I hear negative coverage about the NHS. In this article, I will share some of my thoughts about the best ways to tackle the current NHS staffing crisis. The points here can be used locally or nationally as they are all generic. So let’s get started

ways to NHS

Make it an awesome place to work

People leave if the culture of the team, department, or organisation is not what it should be. We need to make our team, department, and hospital NHS trust the best place to work, where staff or would-be staff wants to come and work. One of the ways you do this is to start by listening to all levels of staff and service users and addressing all the known issues. This could be done via a 360-degree detail consultation with staff, service users, and key stakeholders, covering culture, process, finance, risks, and any other key themes.

Pay them

NHS staff at all levels are one of the hardest, most caring, and most dedicated workforces out there in the world, so if you want to motivate and get them to perform well start by paying them a proper wage. This should not only be their pay but also fix their pension so that the staff will be safe in their knowledge that they will be well looked after once they reach retirement age.

Inspire the next generation

We need to make sure in every school, college, and university up

and down the country when children/students are asked what do you want to be when they grow up/graduate they should include working for NHS among their top 3 careers. NHS is the real superhero in our time and this needs to be drilled into our future generations. Working to save lives and relieve suffering is one of the greatest acts anyone can do.

Fund training

Regardless of how long it takes to train many of the NHS professionals we need to have a detailed plan in place with proper funding for X number of NHS professionals which will fully allow the NHS to meet the demand it is put under. Fund all NHS professional courses so that the would be students are attracted to enter a lifelong career within the NHS. Increase immediately all university/ college NHS career-related course allocations, make new roles such as an associate nurse, etc, and work with agencies to recruit international highly skilled medical staff. All these should be in place while we focus on increasing all NHS-related career numbers within the UK.

Equip your staff

Give your staff the necessary tools to do their duty efficiently. This could be to invest heavily in staff development, staff capabilities, development of multi-disciplinary teams, implementation of proven cost-effective digital tools, and detailed succession planning for each role within the NHS.

Cut out waste and bureaucracy

Every large organisation has wastage we need to manage this and cut out all bureaucracies. We need to do a full review of the highest costs from energy, and sourcing of medicine, and look at ways to minimise these. For example, NHS could look at ways to develop its own top twenty most used medicine within the NHS, at present it may be cheaper to get medicine from abroad but in the long run, when there is a supply chain issue it creates a major knock on effect and ultimately affects our service users. Our goal should be to be more self-sufficient relying on our in-house homegrown resources.

Provide strong humanistic leadership

Best performing leaders are the ones who listen to their workforce and can influence all key stakeholders to move in the right direction. The key here is that we are a team effort and our main goal is to do good for all our service users. We need to forget the power play, and politics and come together and work as one. If we can all work together to contain the pandemic and develop vaccines in record time why not be able to tackle other issues which are facing our NHS?

In conclusion

The NHS is the greatest asset of the United Kingdom. If we do not forget our differences and not work together than we won’t have anything left of the NHS. Containing the pandemic has shown we can do it so I for one still believe in the NHS and only hope that it is here for our future generations.

Recent advancements in the rare disease landscape

How RWE can accelerate development, approval, and access to new groundbreaking therapies.

Maha Muwaffak, Consultant, IQVIA

advancements

Stephanie Castello, Engagement Manager, IQVIA

Valeria Lascano, Principal, IQVIA

The 28th of February marks International Rare Disease Day, which aims to raise awareness and generate change for the 300 million people worldwide living with a rare disease. Throughout this blog, we will discuss the most recent advances in the rare disease landscape from the development of government frameworks, launch of diagnostic services and funds enabling early access to treatment to updated process for approving medicines to be offered by the NHS.

In addition, we will be sharing how real-world evidence (RWE) can play a pivotal role in facilitating the approval of ground-breaking therapies for rare diseases. Rare diseases are a broad range of conditions with a prevalence of 1 in 2,000 people in the general population, equalling approximately 263 – 446 million people globally and 3.5 million in the UK(1,2), or more patients than all cancers combined(3).

Numerous factors can lead to a rare disease diagnosis, however around 80% of those diagnosed are caused by genetic factors with a high percentage starting in early

childhood(4). A rare disease diagnosis carries a lifelong sentence of struggle for patients and their families as these diseases are rarely curable and more than 30% of children with a rare disease die before their fifth birthday(2). Therefore, government, researchers and pharma companies have committed to working on improving the diagnosis, treatment, and healthcare policies for these patients.

Over the years, Patient Advocacy Groups (PAGs) and Non-Government Organisations (NGOs) have been vitally important in  raising awareness and advocating for global health prioritisation as well as taking part in the launch of funding models for Rare Diseases and setting up patient registries suitable for research purposes(3). In 2019, Department of Health and Social Care (DHSC) worked with rare disease patient organisation stakeholders as well as other bodies such as NHS England, to develop a national survey with the aim of identifying the major challenges people living with a rare disease face.

The survey was completed by five key rare disease stakeholders including people living with a rare disease, their families or carers, clinicians, and researchers. The outcomes from this survey  formed as the basis for the development of the UK Rare Diseases Framework which identified four priority areas(5):

• Priority 1: Helping patients receive a final diagnosis faster

• Priority 2: Increasing awareness of rare diseases among healthcare professionals

• Priority 3: Better co-ordination of care between healthcare professionals and patient’s families

• Priority 4: Improving access to specialist care, treatments, and drugs

For the purposes of this blog, we will focus on priority areas 1 and 4 and discuss how these have been addressed so far.

The NHS Genomic Medicine Service (GMS) was launched to address the biggest reported challenge “getting the right diagnosis” for rare disease patients who can spend years seeing multiple specialists and undergoing several tests before receiving a formal diagnosis. Not only, does this lead to frustration for patients, but it has also been estimated to cost the NHS an excess of £3.4 billion(2). With 80% of rare diseases having a genetic component, this service which offers whole genome sequencing routinely for suspected rare disease patients have allowed for accurate diagnosis. Due to the rapid progress of rare diseases, an early diagnosis is crucial for life-saving treatments and preventing life-long disabilities.

To address the fourth priority, National Institute for Health and Care Excellence (NICE) reassessed its approach for technology evaluations that determine if a treatment is cost-effective to be offered by the NHS. Guidance was published highlighting the changes, one of which was the consideration and acceptance

of a wider range of evidence including RWE(6). This offers great flexibility as data from clinical trials for rare diseases that is often limited by very small patient numbers may be supplemented by RWE from affected patients. In addition, in June 2022, the Innovative Medicines Fund was launched which will allow easier and quicker access to lifesaving and ground-breaking therapies for patients, without having to wait for prior approval by the NICE as an NHS funded therapy. Data from real-world sources will be used as part of the NICE assessment of cost-effectiveness(7).

Nonetheless, the generation of RWE for rare disease comes with great challenges. One inherent challenge with all rare diseases is the low number of patients per disease. This not only means low availability of medical evidence, but also restricted access to data. Moreover, patients are usually treated across primary, secondary and tertiary care settings leading to information silos and the need to combine data from multiple sources that may not be compatible.  As most rare diseases have a genetic link, data sources will need to combine both clinical and genetic information. Finally, these diseases are often complex with expertise in pathophysiology, natural history, clinical manifestations, and treatment pathway being limited to very few specialists. To successfully, conduct an RWE study for rare diseases, not only will specialised data-sources be required but also a multidisciplinary team of epidemiologists, medics, geneticists, and statisticians are needed.

IQVIA has a longstanding heritage of conducting RWE studies using a variety of evidence platforms, including Genomics England (GEL), one of the world’s largest whole genome cohorts for rare diseases that is linked longitudinal clinical data. Some excellent examples of studies that can generate RWE for rare disease using GEL include comparison of natural history of disease to understand rate of progression of disease based on genetic markers and clinical endpoints, identification of prevalence/incidence of specific mutation within cohort and identification of novel genomic biomarkers that correlate with the disease severity/progression. IQVIA has a dedicated bioinformatics team with extensive experience working with genomics data in GEL to support such RWE studies.

Other databases that IQVIA can leverage to generate powerful insight into rare disease patient journey from primary to secondary care and to understand unmet need and healthcare resource utilisation, are Clinical Practice Research Datalink (CPRD) and Hospital Episode Statistics (HES). Information from CPRD provides Longitudinal Electronic Healthcare Record data of patients collected from GP practices while HES provides details of all admissions, A&E attendances and outpatient appointments at NHS hospitals across England.

For more novel and niche approaches that cannot be met using information from databases, we are able to

approach sites in IQVIA’s Prime Site Network of leading research and academic healthcare organisations to deliver Primary Data Collection studies (PDCs). Here, data is collected directly from electronic health records, patients or healthcare professionals via interviews and patient/clinician reported outcomes measures to create an enriched and tailored database suitable for purpose.

Finally, as the patient voice in rare disease space can provide insight that cannot be achieved from any data platform, IQVIA has dedicated teams to incorporate patient input in various ways.

The EMEA Patient Advocacy team can engage and harness expertise of rare disease PAGs to enable direct input from patients through PAG owned communities, registries, and communications channels. In addition, IQVIA’s dedicated Patient Centered Solutions team can help design patient experience studies, supporting with collection and interpretation of various types of patient experience data.

To provide a 360⁰ rare disease solution, the expertise of the Rare Disease Centre of Excellence, which is comprised of a group of physicians and scientists, can be leveraged.

IQVIA is committed to contributing to the advancement of rare disease landscape to facilitate better diagnosis and treatment options for patients who have long been neglected. As highlighted in this blog, IQVIA can use its unparalleled data and scientific expertise alongside advanced bioinformatics to provide any rare disease stakeholder with novel and tailored RWE solution fit for purpose.

To understand how IQVIA’s team of RWE experts can support you to leverage these powerful RWD sources, contact us here:  RWI_RFP-and-queries@iqvia.com

1. Nguengang Wakap S, Lambert DM, Olry A, Rodwell C, Gueydan C, Lanneau V, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet. 2020 Feb;28(2):165–73.

2. England Rare Diseases Action Plan 2022 [Internet]. GOV.UK. [cited 2023 Jan 12]. Available from: https://www. gov.uk/government/publications/ england-rare-diseases-actionplan-2022/england-rare-diseasesaction-plan-2022

3. Innovative Funding Models for Treatment of Rare Diseases [Internet]. [cited 2023 Jan 12]. Available from: https://www.iqvia.com/ locations/asia-pacific/library/whitepapers/innovative-funding-modelsfor-treatment-of-rare-diseases

4. Endocrinology TLD&. Spotlight on rare diseases. Lancet Diabetes Endocrinol. 2019 Feb 1;7(2):75.

5. The UK Rare Diseases Framework [Internet]. GOV.UK. [cited 2023 Jan 12]. Available from: https://www.gov.uk/ government/publications/uk-rarediseases-framework/the-uk-rarediseases-framework

6. Changes we’re making to health technology evaluation | Technology appraisal guidance | NICE guidance | Our programmes | What we do | About [Internet]. NICE. NICE; [cited 2023 Jan 22]. Available from: https:// www.nice.org.uk/about/what-we-do/ our-programmes/nice-guidance/ nice-technology-appraisal-guidance/ changes-to-health-technologyevaluation

7. NHS England » Innovative Medicines Fund [Internet]. [cited 2023 Jan 22]. Available from: https://www.england. nhs.uk/medicines-2/innovativemedicines-fund/#when-will-fundingthrough-the-innovative-medicinesfund-be-available-for-medicinesrecommended-for-managed-access

A virtual care platform for positively transforming care pathways

Visiba Care is an innovative, scalable platform for online and video consultations that enables healthcare providers to provide accesible, effective, and secure care through their branded virtual clinic.

Transform patient pathways and give back time to your clinicians. Visiba Care can help

you increase the throughput of patients while optimising patient outcomes.  Red Robin, the AI tool for medical history and triage, guides the patient to the right place in the digi-physical pathway and supports healthcare professionals in medical assessments in the front line of care.

How do we unlock workforce potential through holistic peoplecentred planning?

As part of developing inclusive cultures and compassionate leadership, we talk a lot about giving people permission to be their whole selves at work, about recognising the holistic person and fostering an environment where people can be their authentic self within the workplace. At some point between that personcentred conversation and the planning of our workforce we lose that connection.

The need to go up and out, to take an overarching viewpoint, means we move further away from the individual and more towards the workforce as a whole. With each step outwards we make things simpler and easier to define and understand at a global level, but in doing that we lose the wonderful richness of people and the opportunities that individuals, whole and complete people, with a range of diversity in breadth of knowledge, skills, experience, and potential can bring to our workspaces.

What about if we kept sight of that individual richness and complexity each person had and offered and took that with us as we looked at planning our workforce?

How beautiful, full and numerous would the opportunities be if we took all the richness and possibilities each individual person can offer, expanding and linking those opportunities together into a complex galaxy of interlinking skills, experience and potential across the network of our people.

What if we also mirrored this approach with our patients? Ending up with two maps reflecting each other. One defining local patient needs based on all the breadth of intelligence we have available around our patients, populations and communities around health inequalities, population demographics, population health

management data and more, the other showing the fantastic network of people we have. People rather than roles, with a whole diversity of skills, experience, and potential.

Let’s take those maps and line them up opposite each other and then start to join the dots.

In thinking about the individual patient needs and thinking about our workforce as individuals, we unlock a range of opportunities with which we can broaden our access to workforce capability as well as meeting local patient, population, and community needs.

Is it doable I hear you ask? This hypothetical mirroring galaxies is all well and good, but can it work? Yes it can.

Taking the focus away from ‘posts’ and moving the lens to ‘people’ when exploring workforce planning, along with focusing on local patient needs and matching the two, unlocks a range of creative potential solutions and opportunities that would never see when taking a top-level global view of your workforce.

To find out more about the work we are doing in this area, contact

Sarah Reed Associate Director - Workforce, EDI and Wellbeing

Strategy reform

Iliffe, Professor of Primary Care for Older People, University College London

Richard Bourne, Health Policy Advisor

The care system needs reform as well as increased funding. The hospital-dominated, episodic model is not appropriate for the increasing number of people with mul<ple long term conditions.

Steve

Strategy for

Attention to determinants of poor health and focus on prevention are needed to reduce supplier induced demand.

We should:-

• redefine care in terms of maximising wellbeing

• see care as an investment not a cost

• enforce “care in every policy”

• The aims should be that:-

• those that need care and support can tailor it to their requirements, without intrusive evaluations and multiple assessments

• long term care should provide continuity based on shared planning, with as much choice as desired

• barriers to getting care and support must be lowered so that relatively modest needs are addressed before they become serious or critical

• care and support (as well as diagnosis and treatment) are delivered without lengthy waits, where possible in or near a decent home.

But the care system is in crisis, and it needs a period of stability. That means:-

• no reorganisations, major legislation, new initiatives or targets.

• adopting five year revenue and capital funding settlements

• pledge to accept recommendations of all pay reviews bodies.

There are some urgent actions:

• improve pay and conditions of care workers

• lower barriers to timely access to social care

On workforce

• tackle the causes of poor reten<on and low morale

• adapt Agenda for Change to embrace all care workers

• progress a long term plan for workforce recruitment

• optimise flow (pathways) and restore compliance with ambulance and ED targets

• challenge organisational and professional vested interests causing obstructions

• reduce waiting lists

• increase capacity to meet demand based on data analysis and flow modelling

The care system does not have the leadership or the management skills to bring about these changes quickly... ... so we need to:-

• invest in system management and in data analysis

• end top down “management by shouting”, and slim-down NHS E and DHSC

• allow genuine devolution to ICSs and end the autonomy of NHS FTs.

The public has to be mobilised as Wanless argued 20 years ago, in his “fully engaged scenario”.

This means:-

• reaffirming the core principles of the NHS – universal, comprehensive, free and funded from progressive taxation. Over time these principles should be applied to social care.

• showing genuine openness and transparency, and honesty from leaders

• boosting local accountability and engagement through Integrated Care Systems

• growing a leadership role for Tier 2 Local Authorities in service integration

• engaging with the third sector and using volunteers and community assets imaginatively.

• promoting step changes in expectations for individuals to maintain their own health and wellbeing – like a ‘contract’ between individual and state

We need a long term plan for improvement and change based on a care model built on consensus. Change must be incremental, high level and local, and managed to avoid disrup<on or expensive double running costs.

Reform should be planned over 10 years with early gains to lower barriers to access, fire up a major investment programme, reduce waits and improve quality.

Cutting DNAs and empowering patients with AI tech

Did Not Attend (DNA) appointments cost the NHS more than £1bn, and people miss an estimated 8 million hospital appointments yearly.

Tom Whicher, Founder, DrDoctor

empowering with

However, there is a solution – artificial intelligence (AI) technology can tackle one of the NHS's biggest challenges; predicting and reducing the number of people who DNA.

Why are DNAs on the rise?

DNAs occur for multiple reasons; appointment letters can be delayed in the post, long phone queues can stop people from rescheduling, or people may need more information

to understand the purpose of an appointment. More personalised care is desperately needed to tackle these issues, but it can be hard for administrative staff to take an individualised approach.

Thankfully, AI and patient engagement technology can deliver the solution to unlocking high-volume, personalised care.

Using AI to identify why people DNA

AI can help trusts predict and prevent missed appointments by analysing the multiple factors that impact DNA rates. For example, the DrDoctor AI-driven DNA model is analysing 35 different factors such as demographics, appointment times, working hours and travel, to identify patterns and enable providers to predict who will DNA accurately.

The intelligent risk stratification tool - developed using funding from NHS England’s Accelerated Access Collaborative - is being trained on burgeoning datasets so that NHS administrators have even more insight into which patients need an improved or alternative approach to engagement.

However, staff also need to be able to act on the insight that AI provides.

Patient engagement reduces DNA rates

There’s evidence across the NHS to show how patient engagement technology saves time for staff by automating many tasks associated with patient communication. Letters are digitised and available directly to the patient, reducing the requirement for teams to manage the post.

Patients are texted or emailed with appointment times that they can reschedule without manual intervention, saving hours on the phone managing diaries. Text reminders nudge patients to attend.

And if someone can’t attend, patient engagement tools make it easy to offer last-minute slots to others, so that clinical time doesn’t go to waste.

The AI DNA tool works hand in hand with these solutions. For example, the prediction model can identify patients who are 90% likely to miss their appointment. Personalised communications to such groups can be fully automated, which can meet individual preferences whilst saving further time for NHS teams.

Often these cohorts are the most vulnerable and have the highest accessibility needs. Staff now have the capacity to contact them directly and provide a more tailored, meaningful service built to meet their needs.

The future of AI

AI-powered patient engagement technology is a solution to a significant problem for the NHS –customers using the DrDoctor patient engagement platform reduce DNAs by up to 30 per cent and there’s an expectation for this to increase by another 18% using the AI tool.

Patients today demand more personalised and convenient healthcare services. With the use of AI- powered patient engagement technology, healthcare providers can give people more tailored and productive care in an efficient and scalable way.

Guerrilla self-care

Helen Mason CEO, Rise and Rewild CIC and Powderham Castle

Guerrilla self-care

My pledge for this year’s NHS Academy of Fab Stuff #FabChanges22-23 was about acknowledging it’s ok to not be ok and that I should take responsibility for my own self-care and in doing so inspire others to not feel alone. It might initially appear redundant to state that selfcare should come from the self, but as a person’s need for nurturing, restorative activity increases, their ability to perceive what they need is often in decline as they rush from spinning plate to spinning plate. The world bombards you with blueprints for perfection; optimised diets, lifestyles and bodies; one person’s recipe for restoration is unlikely to fit another’s daily routine. So instead of struggling on in willful ignorance of my body’s warning

signals or feeling like I was unable to fit the cookie-cut ‘best life’, I knew I needed to try something else.

Guerilla self-care, at its core, asks you to look critically at the system that you are operating within; if you are being asked to fill systemic structural deficiencies in your workplaces function with good-will (extra hours, work-arounds, extra risk) then there is a good chance you are on the glidepath to burnout. Some organisations are better than others in recognising when deviation becomes normalised and extraordinary measures put in place to deal with exceptional circumstances become the norm; in my own experience, reminders from management and HR to

Pledging can be a daunting experience; depending on your audience and what you resolve to do, the combination of more scrutiny and less wiggle room seems to run counter to living a relaxing life.

look after my mental health rang slightly hollow placed up against the scale of the challenges we all faced. Resolving to undertake activities that were healing and restorative to me and complete all daily tasks required two things; initially taking time to listen to my body and soul and discover what was meaningful to me, and acknowledging that in regard to relaxing and restorative activity, little and often and possible often trumps planned long periods of relaxation activity that end up competing with daily demands.

In the course of studying Sensory Integration, I was struck by how the eighth sense of interoception, the body’s primal network of signals that cover pain, hunger and fatigue, is habitually quashed in therapists and professional care-givers; when you are focused on building a space that holds and heals your patient, you learn to ignore the hunger, the thirst, the sanitary towel that could do with changing. This learned ability to ignore the warning signals from your body helps you keep powering through; in the short term it is a great asset to you and in the long term it becomes a great asset to your employer.

In my personal experience, being out in nature and making an effort to feel all senses equally within the natural environment led to the ability to feel when my interoception was firing and when a certain stimulus or activity was needed.

There can often be a measure of elitism in the world of therapy; those who have studied and perfected their methods of

relaxation are sometimes quick to dismiss the power of a small action or sensation that holds no meaning for them, but when you find the way to listen to what your body tells you, novel times and places can be found where you can take care of yourself. In practical terms, time needs to be invested to discover what combination and level of sensations allow your interoceptive sense to be felt; try different scents, temperatures, motions and sounds that might be meaningful for you.

I recently ran my first relaxation retreat under the name ‘Rewild Health’; The retreat was for health, social care, teachers and charity workers who had felt impacted by the pandemic and wanted to connect with others.

Keeping in mind that trauma is a whole-body experience, I curated a program to provide that investment that offered opportunities for connecting with the senses in sufficient time and space; nourishing with good food, opportunities for connecting and sharing the experience within a group and time for rest so the experience did not feel pressured.

From drinks on arrival to being served and waited-on at lunch time, throughout the day I introduced opportunities to ensure that people felt cared for and nurtured; this was really important to allow people to let go and to feel that they are important and held in mind.

Inspired by my training in forest bathing I took the group into the late-summer

woods and offered a selection of naturebased ‘invitations’ (activities and ideas that stimulate the senses) which would offer opportunities to engage the nervous system in a playful way. I was lucky to have a team of inspiring alternative therapists and a military veteran survival walk expert to open up the spaces around us in ways that gave new perspectives on seemingly familiar things.

Using my training in EMDR, we took time to explore our own safe place and discussed checking in with ourselves and re-connecting with interoception; listening to the quiet and not so quiet cues from our body.

The retreat was run in the stunning grounds of Devon’s Powderham Castle, within the halls and out on the estate; immersion in a calm and beautiful setting was useful in allowing people to feel they were outside of their everyday stressors, almost in a fairy tale and completely away from most people’s norm. In providing the framework for small moments of self-care and relaxation, the take home message at the end of the event became that it is there are simple actions you can take wherever you are, such as gentle nudges in routine, knowing when to walk away from a job that is harming you, allowing yourself to take a break, bringing nature into the work space or a short walk outside. These were the take homes; you don’t need a Castle to create the same feelings each time but you do need to find a place or state of nurture that is meaningful for you.

New Postgraduate Healthcare Management degrees

Available from October 2021

Developed to meet the increasing demand for managing and leading preventive health services in communicable and non-communicable diseases.

Arden University offers you the opportunity to study online around your current job

MASTER OF PUBLIC HEALTH

Aligned to APHEA European Public Health competencies, this programme will prepare you for a career in the public health sector with particular focus on the latest digital and analytical skills sought by employers.

MSc GLOBAL HEALTH MANAGEMENT

Designed in collaboration with leading employers , this course focuses on issues that impact health but transcend national boundaries.

More full and short qualifications coming in early 2022, including leader and senior leader apprenticeship routes

For more information or to apply please visit arden.ac.uk