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  • 1. Wealth Creation and Academic Health Science Networks
  • 2. Open Business Models in a long tail market and why executing on a “consumer grade” biomedical informatics platform strategy is key to wealth creation for AHSNs 1 The Innovation Health and Wealth report, Accelerating Adoption and Diffusion in the NHS, sets out a delivery agenda for spreading innovation at pace and scale throughout the NHS and was published in December 2011 © 2013 EMC and Aridhia Dr CATHERINE KELLY MBChB, FRCP, FFAEM Medical Director Aridhia CHRIS ROCHE CENG, CITP, MBCS Chief Technology Officer EMC EMEA KIM KINGAN Chief Privacy Officer Aridhia Introduction According to the Office of National Statistics, the amount spent on healthcare in the UK in 2010 represented 9.6% of GDP, up from 6.6% in 1997. In many countries healthcare spend continues to grow much faster than the economy, threatening the economic future of some governments and putting more pressure on businesses and individuals to foot the healthcare bill. Sir David Nicholson remarked in his “Innovation Health and Wealth1 ” (IHW) report that “now more than ever before, innovation has a vital role to play if we are to continue to improve patient outcomes and deliver value for money…the scale and nature of the challenge means that all parts of the NHS will have to take bold long term measures to secure sustainable change.” The report, launched by the Prime Minister in December 2011, sets out the contribution the NHS can make to the government’s ‘Plan for Growth’. The report recommended that the NHS Chief Executive and the Chief Medical Officer should work with partners to designate academic health science networks (AHSNs) that will align education, clinical research, informatics, training and healthcare delivery. In May 2013 the UK government announced that fifteen new AHSNs had been confirmed by NHS England and iterated again that these networks will focus on innovation to boost patient outcomes and contribute to economic growth. Since this announcement there has been much discussion regarding the AHSN’s role in improving translational medicine or providing a mechanism for achieving a step-change in the way the NHS translates research, innovation and best practice into effective and cost-efficient treatments and services for patients. This “lab to the bed” process as it is commonly known, is synonymous with ‘molecular medicine’ or ‘stratified medicine‘, each of which refer to the process of applying molecular insight to the clinical care of the patient. However, little mention has been made of how previously not-for-profit organisations are going to transform themselves into wealth creation bodies that are capable of driving economic growth. Wealth creation within the NHS can be considered a contentious issue. The New Statesman wrote in February 2012 of the need for whole system change to drive wealth creation: “The overall direction of travel will need to be away from a top-down system to a bottom-up, where change is driven less by command-and-control and more by managed-market mechanisms in which power is moved from providers to patients. To be effective, however, these reforms will need to work in tandem with the old NHS mechanisms of strategic planning and priority-setting, which help bring coherence and equity to the health system. The change that is needed is not towards a market free-for-all – you have only to look to the US to see the impact on cost control where that happens – but towards an NHS where a judicious mix of levers is deployed to improve both efficiency and quality.” Whatever your personal view, the wealth creation agenda is here to stay and a review of the stated objectives of all fifteen AHSNs clearly puts wealth creation as central to their remit. 1
  • 3. © 2013 EMC and Aridhia Like many clinicians, and the CEOs of AHSNs, the authors believe that improved patient outcomes and wealth creation are not mutually exclusive. However, the authors also understand that wealth creation has not previously been a top priority for the UK health system and that leaders and management within the NHS may welcome some thought leadership and new points of view. This paper is aimed at CEOs of AHSNs and NHS Trusts and senior clinicians, and introduces business modelling and biomedical informatics concepts that the authors believe the leadership and management of AHSNs will need to embrace if they are to deliver on the wealth creation agenda. In particular, the paper proposes that open business model generation in a long tailed market is the way forward and that biomedical informatics platform execution within those models is key to wealth creation. The first section of the paper sets the scene from a clinician’s viewpoint of informatics. As Medical Director at Aridhia, a biomedical informatics company, Dr Catherine Kelly provides strategic clinical leadership and has responsibility for ensuring the content of Aridhia’s analytical services matches the clinical expectations of clients. She manages the Aridhia multidisciplinary product strategy team and liaises with the external faculty of clinicians and research fellows who contribute to product development. She has over 25 years’ experience in healthcare, spent 12 years as consultant in Acute and High Dependency Medicine at Edinburgh Royal Infirmary and was national clinical lead for eHealth at Scottish Government for three years. Having successfully worked both as a practising clinician and within a commercial environment she is ideally placed to comment on wealth creation. She shares her insights and introduces informatics collaboration as the key differentiator for patient-centred partnerships and the concept of a new biomedical informatics platform. She then offers some core guiding principles on how to build these ecosystems and introduces the concept as trust as a differentiator. To close the first section, Kim Kingan, Chief Privacy Officer at Aridhia, discusses the concept of trust. In most walks of life, and particularly in healthcare, having access to all the skills and knowledge to deliver a great solution is not enough if trust is missing. Without trust in the delivery of biomedical informatics it will be difficult to generate wealth. Kim’s clinical experience of midwifery and nursing coupled with her time as Information Governance Lead within the eHealth Division of Scottish Government Health and Social Care Directorates, gives a unique, clinically-led view of trust. In the second section of the paper, Chris Roche, CTO EMC EMEA, focuses on wealth creation. After introducing the key wealth creation concepts, he references early adopters of wealth creation within health systems and introduces three examples of where these models are in the process of being executed or built. The examples focus on business models that have the following three characteristics: firstly, they will improve patient outcomes for those with long-term chronic diseases; secondly, they drive wealth; and finally they demonstrate how biomedical informatics platform execution is a differentiating factor. The reader is then introduced to the concept of a ’consumer-grade’ biomedical informatics platform that underpins the open business models discussed. Chris has been a business transformation practitioner for the last fifteen years having built and transformed several software, hardware and services businesses for EMC. In his role as CTO Chris builds collaborative networks of organisations to take advantage of the 3rd generation of computing and is an international speaker on how technology and data can be utilised for business model innovation. 2
  • 4. 2 Reduced Incidence of Lower-Extremity Amputations in People with Diabetes in Scotland: A nationwide study. “Diabetes Care”, December 2012 vol. 35 no. 12 2588-2590. © 2013 EMC and Aridhia The Clinicians View of Informatics – Dr Catherine Kelly In all my engagements with healthcare systems globally, I find it is universally accepted that a transformation in how health is practised - from an acute healthcare model to a wellness model - is required if we are to deliver on the goals of lifelong health and improved patient outcomes, and stem the ever-increasing cost of delivering healthcare. It is also universally accepted that medicine is fast becoming an information science. Scotland, where I have practiced medicine, is a good example of how the use of informatics has been a significant enabler in improving health outcomes. For the last twenty years GPs, patients and secondary care health professionals have collaborated to treat diabetes. During this time patient-centric data has been used to manage and coordinate the care and treatment of diabetics across the country at a population level. The use of informatics technology as an enabler for this integrated care model has produced impressive results. In fact if you have diabetes in Scotland you are less likely to suffer from an amputation or blindness than in other countries. The incidence of lower extremity amputations in persons with diabetes in Scotland has decreased by almost 30% over 4 years. The greatest reduction was in major amputation, which fell by 40.7%2 . Suffice to say the lessons learned from this work are that clinically-led use of information and information technology, and collaboration between health care providers and patients across the whole healthcare system, are necessary if we are to accelerate the transformation of care delivery across more disease types and broader populations. The decoding of the human genome and advances in precision and molecular medicine have only brought the need to collaborate and become more adept at informatics into sharper focus. The promise of molecular medicine and its potential benefits to routine clinical practice are enormous, but these benefits can only be realised by bringing together patients, clinicians, academics, life scientists and informaticians to form the multidisciplinary teams of the future. This is why I welcome the creation of AHSNs, and the previous Academic Health Science Centres (AHSCs), as they provide an exciting opportunity to bring together the relevant skills and expertise. This really must be a team sport. As a team sport, patient-centred partnerships, such as AHSNs or AHSCs that aspire to world-class excellence in clinical outcomes, will need to deliver on the promise of personalised therapy and lifelong health. When, in five years, we look back and review the successful partnerships my prediction is that those collaborations that have: • fostered a culture of partnership working across institutional and disciplinary boundaries, and with other world-class centres of excellence • maintained a core focus on industry engagement • harnessed the engineering and physical sciences, and • embraced the emerging field of health and biomedical informatics as a catalyst for change will have delivered on the promises we have made to our patients and the country. 3
  • 5. © 2013 EMC and Aridhia 4 Collaboration and “Co-opetition” You will not have failed to recognise that I believe collaboration and informatics to be vital in achieving healthcare transformation. The NHS has an enormous asset of capability, professionalism and funding, but has failed to produce any semblance of an informatics model that engages the wealth of talent and experience that lies outside the NHS, and that this is in direct opposition to other markets where open collaboration (even amongst competitors and referred to as “co-opetition”) has been successfully embraced. This must surely change if we are to accelerate the implementation of real-time information science and analytics into health care. Without such a focus there is a risk that the translation and impact of research excellence to patient benefit will be attenuated. Those AHSNs that are first to create an ecosystem that facilitates reliable and industrial implementation of cutting-edge informatics and analytics solutions at scale across multiple health systems will take a leading role in the global transformation of healthcare. Such ecosystems will be central to the process of applying molecular insight to the clinical care of the patients. To leverage the skills of multidisciplinary teams, AHSNs will need to provide high-quality, cutting-edge services that undertake and promote innovative linkage and analysis of large health-related data sets, including social and economic data, and build capacity in electronic health informatics research. These services can then be monetised on the global market, attracting investment to UK plc. A renewed, if not new focus, on data science will be required, as will the deployment of a new platform building capability that allows the rapid collection and sophisticated analysis of massive amounts of clinical, patient, imaging and genomic data to provide a comprehensive picture of factors affecting each patient’s treatment and healthcare outcomes. Such an information landscape will enable the delivery of real-time data analysis and disease management services to enhance service delivery, stratify patient risk and improve clinical outcomes. Only then can we begin to empower clinicians, researchers and industry partners to gain fresh insights into correlations between patient, clinical and genomic data and translate these insights into new clinical pathways. In view of the increasing complexity and inter-disciplinary nature of health care, it is essential we build this as an open system that offers choice in the analytics tools and models that can be deployed so that clinicians, managers or researchers are not “locked into” one vendor. Those information vendors who do not embrace a collaborative approach to model creation or data integration, and instead focus on proprietary software and traditional licensing models will, I fear, not prosper in the future NHS, nor enable the NHS to deliver the required improvements to service delivery and clinical outcomes
  • 6. © 2013 EMC and Aridhia Collaborative Informatics Output In any discussion connected to biomedical informatics it is only appropriate to consider the functional output of collaborative informatics. In terms of outputs, the AHSNs should look to address all the core criteria of quality healthcare as defined by the Institute of Medicine. Within that framework this would mean the development of analytical and data tools that are efficient, safe, effective, timely and equitable. With this framework these tools would need to; Efficient • Track and monitor patients at different stages of the patient (e.g. cancer) pathway. • Maximise the use of existing available data within the healthcare system. • Provide metrics that enable healthcare providers to identify opportunities to improve the efficiency of care along the pathway. Safe • Give healthcare providers the information they need to make informed clinical decisions. • Reduce the risks associated with handover of care between different healthcare provider groups. Effective • Ensure patients are stratified correctly according to risk so they can be managed in the most appropriate facility according to their clinical need. • Assess patient outcomes to ensure treatment effectiveness. • Be patient-centred. • Enable care to be delivered locally, where appropriate, through sharing of information between healthcare providers and organisations. • Provide patients with information which enables them to make informed choices about their care. Timely • Provide healthcare providers with more rapid access to information and treatment decisions. • Enable healthcare providers to assess clinical outcomes based on near real- time local data. Equitable • Ensure transparency of data and near real-time availability of clinical outcome metrics as transparency reassures patients that their care will be delivered to a consistently high standard, irrespective of their geographic location, demographics or ethnicity. 5
  • 7. © 2013 EMC and Aridhia 6 Core Principles of Biomedical Informatics Collaboration Trust between those that collaborate is as fundamental as trust in the privacy of the data and platform that is hosting that data. The foundation of trust between successful collaborations is built on agreed principles, and health informatics ecosystems are no exception. Agreeing these principles with all stakeholders prior to embarking on a journey to transform your biomedical informatics capability is critical to securing participation. As with any transformation programme there will be challenges on the way and having a set of guiding principles will facilitate rapid execution and conflict resolution. Below are eight suggested founding principles for informatics collaborations; 1. Be focused on patient needs and values, and the pathways of care that patients follow across primary, secondary and tertiary providers. 2. Aim to create the outstanding national exemplar of a NHS/academic/ industry informatics. 3.  Act as a giant incubator creating a unique space for nurturing new informatics solutions, enabling them to grow, mature and evolve until they are ready for patients, “think big, start small, move fast” and also “fail fast and move on”. 4. Promote the acceptance and adoption of new informatics approaches with relevant stakeholders, including policy makers, industry and the public. 5. Develop solutions that have global applicability. 6. Be a visible and high-profile environment that engages with all stakeholders including patient groups, charities, regulators, policy experts, politicians and industry experts. 7. Deploy cutting-edge standards of governance that ensure consent and ethical standards are met. 8. Act as an inter-disciplinary forum for innovation and education.
  • 8. 3 Sensitive Personal data as defined within the UK Data Protection Act 1998. 4 5 6 7 8 © 2013 EMC and Aridhia Embracing Trust as a Differentiator – Kim Kingan Early on in any conversation regarding sensitive personal data3 the conversation turns to privacy, security and ownership of data. These are real concerns that should be discussed openly; however, apprehensions should not be used to impede innovation. ‘Trust’, which I will use as a broad term to embrace all privacy and security questions, should be seen as a competitive differentiator. In fact the NHS4&5 is well positioned to take advantage of trust as a source of wealth creation. Within the UK, the NHS remains a trusted institution. Is it perfect? No. The Data Sharing Review Report6 , the Report on the review of patient-identifiable information7 and its recent follow up Caldicott 2 “Information: to share or not to share8 “ recognise that there is considerable variation in the interpretation of the legal and regulatory environment and data controllers are often unsure whether they can legitimately make data available for research. AHSNs that wish to prosper in the new paradigm of clinical outcomes linked to wealth creation will need to demonstrate a clear vision and strategy, underpinned by robust information governance arrangements. This may include: • Viewing information governance as an enabler for information sharing and providing integrated care and research. • Appointing dynamic and skilled leadership including a Director at Board level who is formally responsible for information governance and who can oversee the safeguarding of personal confidential data. As greater information sharing between health and researchers develop, expert leadership and the ability to work across health and academia are essential. • Developing clear policies, processes, access control and ways in which to get appropriate levels of support are proactively applied • Harmonising and consistently applying guidance and processes across the AHSN to enable staff to feel confident in applying them appropriately in a manner that enhances care and helps to develop a thriving research environment. • Ensuring that everyone working with personal confidential data is aware of and understands their responsibilities. • Publishing in a prominent and accessible form information to let the public and patients know what data sharing is taking place and why. The test now for AHSNs is how to navigate a clear path through the challenges that joint working brings and begin to function both locally and nationally as truly collaborative entities. In the second section of the paper, business transformation practitioner, Chris Roche, focuses on wealth creation and discusses open and long tailed business models and introduces the concept of a ‘consumer-grade’ biomedical informatics platform that underpins each of models. He also describes three practical healthcare examples of open business models in a long tailed world. 7
  • 9. 9 The Gallup-Healthways Well-Being Index reported in October 2011 that full-time that workers in the U.S. who are overweight or obese and have other chronic health conditions miss an estimated 450 million additional days of work each year compared with healthy workers, resulting in an estimated cost of more than $153 billion in lost productivity annually. Wealth Creation Environment within the NHS – Chris Roche The link to wealth creation within the healthcare system of any particular country has usually been discussed at the macroeconomic level. The adage that ’a healthy nation is a wealthy nation’ is common among economists. It is well understood that healthy people are productive people and consume less social and health care resources9 . Government initiatives that aim to improve the general health and wellbeing of the working-age population, and therefore support more people with health conditions to stay in work or enter employment, are also strategies that link health to economic growth. This section is focused, however, on more direct economic growth and how additional high-value jobs within England could be created as a direct result of an ASHN’s intervention. This includes the attraction of inward invest from abroad to fund such job creation. It also focuses on how ASHN’s could monetise additional services they could offer. In business, wealth is created by an organisation that provides a unique value to its environment by adding more value to its outputs than the cost of all resources used to produce those outputs. Wealth creation requires a uniqueness and efficiency. Fundamentally enterprises are paid to create wealth, not control costs. However, for the last 65 years the role of the NHS has been to improve patient outcomes in a cost containment environment, not a wealth creation environment. At first inspection many NHS Trust and AHSN CEOs will be concerned with the amount of transformation that has to take place from moving from a not-for-profit organisation into a wealth creation body. Some of these concerns may be personal. Many CEOs will have built their careers within a system that is extremely cost conscious and not responsible for wealth creation. Some may have no formal business training, or practical experience of wealth creation in a commercial context. Interestingly though, it should not be overlooked that money is always an inadequate motivation when it comes to wealth creation. The challenge with using money as a motivator is that it works in the short-term, but when things get hard it is easy to say “forget about the money – I’m OK with what I’ve got.” To be truly motivated and to push through the inevitable challenges, you need to be clear on the real reason you’re doing what you’re doing. The clear advantage the ‘NHS has is that the AHSNs will focus on delivering innovation to boost patient outcomes as the prime reason they are doing what they are doing, which will then contribute to economic growth. This focus should be at the forefront of the decision making when building open and long tailed business models with partners, but it should also be stated that health and wealth are not contradictory. Focusing only on one aspect of the model will not lead to a sustainable NHS. © 2013 EMC and Aridhia 8
  • 10. 10 “Business Model Generation, A Handbook for Visionaries, Game Changers, and Challengers” Alexander Osterwalder & Yves Pigneur ISBN “ 978-0470-87641-1 11 Miles Ayling, director of innovation, NHS England was reported in an interview in the Guardian Newspaper as saying, “The success and failure of AHSNs will to a large degree be judged on their ability to have reduced variation and to have scanned for and spread best practice and new ideas across their networks.” 12 Department of Health, Long Term Conditions Compendium of Information, Third Edition, May 2012. © 2013 EMC and Aridhia A Business Model Approach to Wealth Creation Osterwalder and Pigneur, in their book Business Model Generation10 , offer a practical guide to designing disruptive new business models. It is this guide that has been used to assess and recommend that an open business model and platform execution is key to wealth creation in the future NHS. The Long Tail Model of Wellness Consider the context within which all AHSNs are operating. Today the provision of healthcare is mainly through an acute model, where the patient becomes ill prior to any treatment regime being recommended. When this treatment is delivered it can often be delivered in silos, where the treating organisation is placed at the centre of the decision process and not the patient. This disjointed provision of healthcare service and fragmented sources of clinical information do not readily support the delivery of high-quality clinical care, or the assessment of clinical outcomes. A number of AHSNs11 have already set goals on creating population-centred healthcare systems where they wish to identify and address unwarranted variation in clinical practice and patient outcomes by disseminating evidence-based best practice, placing the patient and the population at the centre of care. This fragmentation also takes place against the backdrop of patients with chronic diseases. In the UK, chronic disease patients are intensive users of healthcare services and account for 70% of all healthcare spend12 , an enormous sum which is replicated across the globe, and which has the potential to affect sustainability of healthcare services in many countries. If business wealth is created by an organisation that provides a unique value to its environment, and if the overall goal of the NHS is improving patient outcomes, it would seem that a ready-made marketplace to focus on within the health service is that of long-term chronic disease. You can get no more unique a product or offering than one which is bespoke and tailored to meet the needs of the individual. We would all, no doubt, prefer to have a bespoke suit made for us rather than an off-the-peg suit, if we could afford it. It is widely accepted in healthcare that the concept of “bespoke” is through the advancement of personalised, or stratified medicine. Stratified medicine and the use of biomedical informatics offer the real possibility of transforming healthcare from an acute model to a wellness model; a model where patients are managed both as individuals, but also within the context of the broader population; where preventative intervention is the norm based on the use of advanced biomedical informatics; where innovation in the lab truly reaches the bedside. In a business context this personalisation approach, a moving away from focusing on selling large volumes of a reduced number of products, to selling small volumes of hard to find items to many customers, is known as the Long Tailed Business model. The concept was first coined by Chris Anderson, editor of Wired magazine, in relation to online retail marketing. His theory states that when consumers are given unlimited access to a wide variety of products, they instinctively migrate towards more personalised options which were previously unavailable to them. This concept is now an internationally accepted approach in modern marketing strategy, and has been used to fantastic effect by organisations such as Amazon and Netflix, negating the central tenet of ‘golden age’ mass-media marketing. As the global healthcare market becomes increasingly consumerised, AHSNs need to realise that they are selling/competing in a Long Tail Market (LTM) and build wealth creation strategies that address the new realities of the global information economy. 9
  • 11. The characteristics of a LTM, as described by Osterwalder, are the focus on niche customers (personalisation), the use of advanced information management to understand clients (biomedical informatics) and the matching of solutions to customer preferences. The key resource to achieve this is the information platform and the key activities include platform maintenance and niche content acquisition (genomic data) and production. The parallels to the future personalised healthcare model are clear. Medical professionals, healthcare organisations and patients will all pay for unique insights that offers them the chance to tailor personalised treatment regimes to the individual, as evidenced by the continued growth in the consumer health technology market. The use of biomedical informatics and big data analytic platforms to find interesting patterns and associations in vast amounts of raw data therefore become key activities alongside the acquisition and integration of genomics data with information from the sharp end of clinical practice, i.e. patient records, laboratory results and medical images. Understanding how the mechanics of the LTM work therefore becomes a leadership capability AHSNs may wish to develop. AHSNs have the opportunity to build niche data services on top of newly created data lakes or safe havens of healthcare combined data. For example, the research community would find population wide data sets very appealing to use as part of their work. There is also the potential, under the right governance model, for reuse of these data and platforms to accelerate the drug discovery process through, for example, in silica testing or cohort selection. The capabilities or services developed by AHSNs for use within their own environment suddenly become interesting ‘exhaust businesses’ that could be used to drive wealth creation by offering these services to health systems outside of the UK. An Open Business Model The second context within which AHSNs must operate is that the government has made it clear that, by design, an AHSN must be collaborative. It is well understood that innovation will only be achieved by academia, healthcare and industry working together. Again, many AHSNs have as a goal the need to complete the translational research process and accelerate the diffusion of innovation into mainstream practice, and to align and integrate clinical service and the translational research infrastructures to bring rapid benefits to patients and deliver health priorities. In a business modelling context this is known as an open business model (OBM) approach. This is a common approach utilised in the pharmaceutical and research industries to accelerate innovation. Value is created by systematically collaborating with partners. Osterwalder and Pigneur describe the need to invest in the building of gateways to external resources and in platforms that connect people. They continue to comment that leveraging strong brands is a distinct advantage as well. Strong brands can act as an “attractor” for individuals and organisations to use a service. The more capability attracted, the more collaboration undertaken and therefore more innovation is generated. The point to note here is Osterwalder’s comment that this is “systematic collaboration”, not a nice to have. Value is not created per se by the product, but by the applied use of the product or services. In many OBM environments this applied use and revenue generation is often captured through the creation of new spin-off companies formed between the collaborating partners, or as a result of new products or services being sold under license or royalty. © 2013 EMC and Aridhia 10
  • 12. © 2013 EMC and Aridhia Deploying an Open Business Model in a Long Tailed Market It becomes evident that to create wealth, an AHSN should consider focusing on building an OBM that addresses the new long tail market of the healthcare system. This is different from building a model that focuses only on optimisation of the current operating model, or a model where only one organisation receives maximum profit. The ill-fated NHS Connecting for Health programme was characterised by lack of collaboration, as not all organisations were focused on the overall health goal and some attempted to maximise profits for themselves alone. The notion of building a strong platform is central to both the LTM and the OBM. It is clear that the ability to build and invest in a platform that allows collaboration to take place both at the biomedical informatics level and relationship level is key. Collaborating with industry partners who have a history of driving common platforms becomes attractive, as does collaborating with a strong brand to drive use of the platform. Facebook, for example, use their ‘consumer-grade’ information platform to great effect. This platform is a convergence of new technologies, (mobile, social, cloud and big data) which has enabled the rapid development of a new class of data-driven and context intelligent applications. These applications are quickly changing everything about how we live and work, and in this context, building a ‘consumer-grade’ biomedical informatics platform becomes an interesting proposition. Facebook’s model however is a double sided business model in that users get access to services for free because Facebook drive revenues from advertisers. AHSNs may feel that wealth generation from advertising may not be appropriate. Other strategies to drive revenues from platform-enabled business models include building service portfolios that can be sold in conjunction with the platform. For example, this may include access to the platform or consultancy or education to exploit the platform. This is seen to quiet dramatic effect in the software industry, where the days of buying proprietary software seem to be numbered. Many software vendors will license their base software free to the user through, for example, the Apache Foundation, and then create revenue streams by providing advance features or support services. The Spring and Cloud Foundry software development platforms are excellent examples of this. Consider the scenario where an informatics programme in precision medicine commissioned by a non-UK body, and delivered by an AHSN, identifies, as a by- product of its research, a number of patients who now have a genetic mutation that will significantly impact their lives. The delivery of such news needs to done in a sensitive and professional manner. The fact that this information was not the primary outcome of the project may mean the opportunity for the AHSN to offer additional clinical counselling services from one of its members to the commissioning organisation. The author envisions a multi-faceted services model that supplies the health service, the Pharma industry, researchers, contract research organisations and, of course, patients. The model would be a layered model where data services such as; provisioning of research safe havens, linked data sets or clinical extract, load and transform are combined with knowledge and clinical services such as; model building, standard definition, educational, legal and commercial services, and clinical services such as counselling. These outcome-based services could be focused, for example, on personalised target therapy and include pathway monitoring, pathway metrics or stratification. Another focused area could be pharmacogenomics for testing and include such outcome based offers as the supply of a pharmacogenomics profile with risk assessment or biomarker driven trials. 11
  • 13. Practical Examples of Open Business Models in a Long Tailed World Even though AHSNs are a new introduction in NHS England they are not a new concept all together; in fact the concept of collaborative networks and building open based business models on a biomedical informatics platform has been gaining momentum in both Scotland and Northern Ireland over the last five years. This section will introduce three case studies, two in Scotland and one in Northern Ireland. Each case study is at a different point on their journey to create wealth and economic growth from leveraging the healthcare system. Each case study’s primary focus is the improved health care outcomes of the population and each study is an example of deploying an open business model into a long tailed market. The first case study is Aridhia, a Scottish based biomedical informatics company who firmly believe that collaborative working between health and social care organisations, their multidisciplinary team and their partners is crucial to identifying routes to success, breaking down barriers and delivering innovative technology solutions to issues which affect us all. The company itself has the NHS as a shareholder, again unique, and is involved in a number of international collaborative engagements. One of those engagements forms the basis of the second case study that is Stratified Medicine Scotland Innovation Centre (SMS-IC). The SMS-IC is set to bring together expertise from within Scottish industry, academia, Life Technologies, a gene sequencing company, and the NHS to drive forward a new age of stratified medicine globally, with the aim of offering improved, personalised healthcare treatments, tailored to the genetics of individual patients. This model is, in all but name, an AHSN. The final case study is the Northern Ireland Government. The Northern Ireland Executive launched its Economy Jobs Initiative in November 2012. The initiative included a number of measures to help support economic growth, including a commitment to exploit the economic opportunities from the health and social sector. This included an announcement by the Minister of Health, Social Services and Public Safety and the Minister of Enterprise, Trade and Investment that Northern Ireland must employ ground-breaking technology and innovation to give more patients with chronic illnesses the freedom to manage their condition. As part of this initiative the Government funded the Northern Ireland Connected Health Ecosystem: a forum which will bring together stakeholders from the health service, academia and business to discuss and take forward connected health solutions within Northern Ireland, again an AHSN in all but name. In addition to the ecosystem, the Ministers are jointly delivering the creation of a Health Innovation Life Sciences Hub that is on track to create several hundred healthcare related data science jobs in the region. © 2013 EMC and Aridhia 12
  • 14. 13 Professor Morris, MB CHB, MSC, MD, FRCP(EDIN & GLAS), FRSE, FMEDSCI is currently Dean of Medicine at the University of Dundee and Chief Scientist for Health in Scotland. He was appointed Lead Clinician for diabetes in Scotland (2002-2006). 14 Dr David Sibbald, OBE, is the Chairman and CEO of Aridhia, which he founded with Professor Andrew Morris in 2007. Prior to founding Aridhia, David was the Co-Founder, Chairman and CEO of Atlantech Technologies. 15 Reduced Incidence of Lower-Extremity Amputations in People with Diabetes in Scotland: A nationwide study. “Diabetes Care”, December 2012 vol. 35 no. 12 2588-2590. © 2013 EMC and Aridhia Aridhia Aridhia, a Scottish based biomedical informatics company has built an open business model that is unique for an informatics company in that: • They are a clinically led multidisciplinary team. There is a faculty of clinical specialists who lead all engagements to ensure that all client solutions are focused on improving health. Data scientists, health information specialists, application developers and data privacy teams support the clinical team. • Their collaborative working extends to building financial and commercial models that reward all the participants including academia and healthcare trusts. For example, in some collaborations, ongoing royalty payments are paid to universities who have contributed statistical modelling work to the solution. • They have been early adopters to embrace the concept of building a consumer grade biomedical informatics platform that integrates patient and clinical data from existing source systems, processing and modelling this data before reflecting it back to end users via a range of analytical services. Aridhia developed out of a chance meeting in 2007 between one of the world’s leading diabetes physicians, Professor Andrew Morris13 , and a long time Scottish entrepreneur and IT specialist, Dr David Sibbald14 , where they discovered a shared interest in informatics and a mutual belief that it was key to the transformation of healthcare service delivery. For twenty years Professor Morris had coordinated the treatment of diabetics across Scotland at a population level. Using biomedical informatics technology, that was available at the time, Professor Morris was able to achieve impressive results. In fact today if you have diabetes in Scotland you are 40% less likely to suffer from an amputation or blindness than in other countries15 . Both men believed that the current disjointed provision of healthcare service and fragmented sources of clinical information could be improved through the use of biomedical informatics to support the delivery of high-quality clinical care, or the assessment of treatment on clinical outcomes. Professor Morris knew from his own experience that implementing a standard informatics solution which cannot be customised to an organisation’s needs and does not take account of availability of data would not support the sustainable patient improvement or wealth creation. The challenge they had was to accelerate the work Professor Morris had started across not only diabetes, but other chronic conditions. Out of this challenge and desire to improve the health of the world Aridhia was created. The approach they took was to form a company that built a business model that put collaboration at the heart of everything they did. Working with a diverse, collaborative group of experts in chronic disease academic research, biotechnology, big data analytics, IT hardware, pharmaceuticals and innovative health research and development gives them deep insights into how to address the needs of healthcare organisations, patients and clinical researchers. 13
  • 15. From a wealth perspective this approach has already created over 90 high-skilled jobs into the Scottish economy and attracted foreign investment into the country. An example of this collaborative business model attracting foreign investment was their work with the Kuwait Ministry of Health. Nominated as ‘International Collaboration of the Year’ in the Times Higher Education Awards 2012, the Kuwait Scotland eHealth Innovation Network brings together the Ministry of Health of the State of Kuwait, Dasman Diabetes Institute, the University of Dundee, NHS Tayside and Aridhia. The aim of the collaboration was to embed education, research, biomedical informatics and quality improvement at the heart of a programme that will transform clinical care for diabetic patients in the region. An additional wealth spin-off for Scotland is the 200 Masters students on the University of Dundee-accredited degree programmes working in healthcare in Kuwait, mainly in primary care, where they are applying this learning directly in clinical practice. In 2012 Aridhia took the strategic decision to adopt a consumer-grade biomedical informatics approach to their information platform. As the promise of molecular medicine became more tangible through the falling cost of full genome sequencing they realised that their current data architecture was not fit for purpose. Understanding that new insights will be found in the acquisition and integration of genomics data with information from the sharp end of clinical practice, i.e. patient records, laboratory results etc., they made the strategic decision to re-platform their business to a more suitable information management platform for the consumer age. Even this decision was taken in a collaborative mindset when Aridhia agreed a strategic partnership with Pivotal, the company setting the new standard for Enterprise Platform as a Service (PaaS). Pivotal put community and collaboration at the heart of their development and investment strategy so became an ideal fit as a technology partner with Aridhia. Developing on the Pivotal One™ platform, the companies agreed to work together to provide the international healthcare, life and biomedical science markets with applications and services that enable the rapid, sophisticated analysis of massive amounts of clinical, patient, imaging and genomic data and provide a comprehensive picture of factors affecting each patient’s treatment and healthcare outcomes. It was this collaborative approach and combination of consumer-grade technology with advance gene sequencing technology that led to Aridhia being a lead technology partner in the award of a globally significant program to determine the future of healthcare, the Stratified Medicine Scotland Innovation Centre, which is the subject of the next case study. © 2013 EMC and Aridhia 14 eHEALTH INNOVATION NETWORK
  • 16. 13 Professor Morris, MB CHB, MSC, MD, FRCP(EDIN & GLAS), FRSE, FMEDSCI is currently Dean of Medicine at the University of Dundee and Chief Scientist for Health in Scotland. He was appointed Lead Clinician for diabetes in Scotland (2002-2006). 14 Dr David Sibbald, OBE, is the Chairman and CEO of Aridhia, which he founded with Professor Andrew Morris in 2007. Prior to founding Aridhia, David was the Co-Founder, Chairman and CEO of Atlantech Technologies. 15 Reduced Incidence of Lower-Extremity Amputations in People with Diabetes in Scotland: A nationwide study. “Diabetes Care”, December 2012 vol. 35 no. 12 2588-2590. © 2013 EMC and Aridhia Stratified Medicine Scotland Innovation Centre The Stratified Medicine Scotland Innovation Centre (SMS-IC) will focus primarily on developing new forms of treatment for chronic diseases, including cancer, stroke, diabetes, rheumatoid arthritis and respiratory and cardiovascular diseases. It aims to build on recent advancements in biomedical research, which have begun to identify why people with the same disease do not behave in the same way, and why treatments are more effective for some people than others. The SMS-IC is an AHSN in all but name. The Scottish Funding Council is providing £8m over five years to back the creation of the £20m SMS-IC at the new South Glasgow Hospitals Campus. The SMS-IC will also involve a consortium of other universities, NHS Scotland, and industry partners. Construction work on the physical centre has begun, with a fully-operational centre due to open in September 2015, although initial healthcare exemplar projects are scheduled to start in January 2014. The consortium is an open business model and has already secured a commitment of £2m in cash and £4.6m in-kind investment for the project from core business partners, including SMEs. The key business partners are Life Technologies and Aridhia. There is a clear economic argument for the development of stratified medicine as well as the medical benefits. Of the £595bn global spend for pharmaceuticals in 2011, an estimated £393bn was used for therapies which did not produce the desired effect. Wealth creation was also central to the decision with a recent independent economic impact assessment forecast that the Centre could generate up to 334 jobs and up to £68m to the Scottish economy over its initial five-year funding period. The Centre aims to attract sufficient research sponsorship from industry partners to allow it to become self-sustaining within five years. Commenting on the newly announced Innovation Centres, First Minister Alex Salmond said: “This is an exciting new collaboration between all parts of public life, with Scottish industry, higher education institutions, multinationals, our small and medium sized enterprises and our public sector partners working together to provide solutions to demand-led problems facing industry in Scotland by supporting innovation for future growth. “Innovation Centres offer game changing opportunities for collaboration between our academic and business base. The investment and partnership model is unique and their potential for growth is huge.” Though clearly in an earlier stage of development than the Kuwait example in the previous case study, the SMS-IC decision endorses the approach that an open collaborative business model utilising a consumer-grade informatics platform has game changing potential not just for health outcomes but for wealth ones as well. If the AHSNs of NHS England can learn from advances in the Scottish health system, they would also be well advised to look across the Irish Sea and learn from progress that is being made in Northern Ireland. 15
  • 17. Northern Ireland Northern Ireland (NI) is a unique region with respect to healthcare data and innovation. One of the few countries that has health and social welfare under the same ministry, it is betting big on collaboration, open business models and consumer-grade biomedical informatics platforms to generate wealth and transform to a wellness model of healthcare. In most governments health and social care are organisationally kept apart. This organisational structure is reflected in the fragmentation and management of data across both government bodies. In NI this fragmentation is reduced and as a result processes and people are more aligned, making it easier to implement operational change. Edwin Poots MLA was appointed Minister of the Department of Health, Social Services and Public Safety in the Northern Ireland Executive on 16 May 2011 and has been a driving force in Northern Ireland’s work on connected health since that date. In December 2011 he co-signed a Connected Health and Prosperity Memorandum of Understanding (MoU), between his Department and Invest Northern Ireland, the local economic development agency, stating at the time that the £4bn spent on healthcare in Northern Ireland should, going forward, be considered an investment in the economy and not a cost just to be managed. This defining statement could be the watershed moment in the transformation of NI as a global player in wealth creation from healthcare transformation. As a direct result of this MoU NI launched the Northern Ireland Connected Health (NICH) Ecosystem to bring together academia and industry with the health and social care sector: an AHSN in all but name. The NICH ecosystem plays two important roles. Through its European Connected Health Alliance they are starting to forge links with external countries. For example, NI has signed MoUs with the Basque Region of Spain, and Finland. They also have important links into Boston USA via the Northern Ireland Massachusetts Connection (NIMAC). These connections recognised that closer cooperation in the area of healthcare has the potential to unlock key European Union healthcare funding. Importantly NI is building strong links to other economies that become ready-made sales channels for inward investment and wealth creation. The country realises it is in a commercial market and has to actively sell when looking to create wealth. In essence NI is using itself as a platform upon which to develop relationships and partnerships; a classic behaviour when building an open business model. The second role the ecosystem is playing is that it is already generating self-sustaining funding for the country by charging for membership to the system and holding quarterly meetings in NI, though they have also met in Finland and Boston. With over 60 members, many from outside of the region, even the conference and hotel industries are starting to benefit from this wealth creation initiative. These meeting are a real demonstration of the alignment between the health service, academia and local industry and are an impressive shop window to the visiting members. More significantly perhaps were the recommendations in May 2013 as a result of the economy and jobs initiative task and finish report. The premise of this report is that wealth creation is dependent on building open business models and executing on a consumer grade biomedical informatics strategy and this is reflected in the key recommendations of the task and finish report which were to establish: • a Health Innovation Life Sciences Hub • a resource dedicated to international collaboration • an International Health Analytics Centre, and • a Connected Health Integration Platform. Northern Ireland itself is at a different point of evolution to the other case studies, but they understand the dynamics of the new market they are in and are working hard to ensure the culture is aligned to one of collaboration. The government realises the need to build relationships at speed and so grab stakeholder mindshare and subsequently greater wealth. © 2013 EMC and Aridhia 16
  • 18. 16 IDC defines that the “3rd Platform” for IT growth and innovation will be built on mobile devices, cloud services, social technologies, and Big Data. 17 New data fabrics facilitate the real time ingest and query of high capacity data of any type, be it imaging, genomic, or device generate data, and allow that data to scale across commodity infrastructure. 18 IDC define a 2nd Platform as the distributed computing solutions that are based on a relational data model using a client server architecture. © 2013 EMC and Aridhia Consumer-Grade Biomedical Informatics Platform The case studies introduced examples of business innovation by building an OBM within AHSN-like entities. The case studies focused on the business modelling aspects but underpinning all of these models is a strong biomedical informatics platform that facilitates collaboration to take place both at the biomedical informatics level and relationship level, a collaboration that facilitates the application of advanced analytics to clinical practice. It is noticeable that in the preceding case studies the organisations are adopting new 3rd generation technologies16 upon which to build their business models. So what is the detail behind the technology and data platform that these forward-looking innovators are investing in? In the last three decades, we’ve seen a shift in enterprise information technology, from mainframes that automated our financial information, to the client-server and web- based world that aimed to replace most paper-based processes with “systems” like CRM, ERP, e-commerce and email. Think of the electronic patient record (EPR) as the healthcare system that has replaced the paper based health record. And now, in the cloud era, we find ourselves on the brink of another transformative shift, one driven by the explosion of data and the need for traditional enterprises to find new business value through new business models and building better customer experiences. Paul Maritz, the CEO at Pivotal says “A key question becomes how this shift will become a reality and where we will look for a blueprint to begin. I think the answer, or at least the opportunity to see further, comes from “standing on the shoulders of giants. And in this case specifically, I’m talking about the consumer internet giants like Google, Facebook and Amazon.” Martiz continues “’Carrier-grade’ or ’industrial-grade’ — and yes, of course, ’enterprise- grade’ — once represented best-in-class products and technology while ‘consumer- grade’ was associated with lightweight technology not fit for a professional, high- performance environment. Well, things are changing; the former lightweight is the new heavyweight. Consumer-grade will become the new benchmark.” Powered by new data fabrics17 with custom-built infrastructure, these consumer internet companies interact and serve their customers in the context of who their customers are, where they are and what they are doing in the moment. They are building, deploying and scaling at an unprecedented pace. They are storing, managing and delivering value from large data sets, and they knit all of this together on one unified platform that supports their businesses. These companies have created significant new business value and blazed new trails in developing ways to manage and extract meaning from massive amounts of data. As a result, they are able to deliver meaningful products, features, and experiences rapidly to their customers - essentially, giving customers what they want, when they want it and where they want it. Wouldn’t it be nice for healthcare to have the same capabilities? When building their business the Internet giants looked at the current technology stack of the 2nd generation18 and realized that it was not enough. Healthcare and Research and Development industries now have the opportunity to leverage this technology shift to what IDC have called the 3rd Generation platform, a platform that has the capability of delivering millions of applications to billions of users. Healthcare is ideally positioned to capitalise on this change, as predictive applications can deliver insights and solutions into the hands of millions of patients who don’t have access to doctors or specialists. 17
  • 19. 19 Open-source software (OSS) is computer software with its source code made available and licensed with a license in which the copyright holder provides the rights to study, change and distribute the software to anyone and for any purpose. Like Facebook or Linked-In, it is important that any 3rd generation consumer-grade biomedical informatics platform promotes the access and sharing of data. Clearly this must be done in a secure environment, but must also deliver a user experience that promotes easy adoption. Additional features of a consumer grade biomedical informatics platform must also include the ability to: • Deliver real-time data analysis and disease management services to enhance service delivery, stratify patient risk and improve clinical outcomes. • Enable the rapid collection and sophisticated analysis of massive amounts of clinical, patient, imaging and genomic data and provide a comprehensive picture of factors affecting each patient’s treatment and healthcare outcomes. • Empower clinicians, researchers and industry partners to gain fresh insights into correlations between patient, clinical and genomic data. • Offer choice regarding the analytics tools and models which can be deployed so researchers are not “locked into” one vendor. All consumer grade platform development, in whatever industry, is being built on Open Source Software19 (OSS). OSS facilitates not only the rapid development of biomedical informatics applications but does so at a fraction of the cost of 2nd generation proprietary software models. The main technologies capability underpinning the shifts to a 3rd generation consumer grade bioinformatics platform are: • Massively Parallel Computing (MPP): MPP is the ability to coordinate the processing of a computer programs algorithm across multiple processers. This massively accelerates the speed at which computations are completed. Due to the associative and commutative properties of many statistical algorithms, MPP allows models to be run against significantly larger data sets. • Machine Learning and Bayesian Statistics. Advances in MPP means the ability to run Bayesian statistical methods. These methods are particularly suited to the assessment of association between genetic variants and disease or other phenotypes. • Hadoop focused Compute and Data Fabric: Hadoop is a programming framework that supports the processing of large data sets in a distributed computing environment. It is particularly suited for use with gene sequencing and mapping to a reference genome. The data fabric layer should also handle many types of data making correlation between genotype and clinical data a reality. • Application Fabrics that provide a rich developer ecosystem that enables rapid application development and support for messaging, database services and robust analytic and visualization instrumentation. • Data Science Productivity software: Software that provides an analytic productivity environment that enables the data science team to collaborate, search, explore, visualise, and import data from anywhere in the organisation in a dynamic interactive model. © 2013 EMC and Aridhia 18
  • 20. © 2013 EMC and Aridhia Resistance to Change It is worth mentioning at this point that AHSNs may encounter resistance from some platform providers. NHS Trust CEOs will be all too familiar with the challenges of change within their own organisations. When developing OBMs to drive innovation there is the need to develop external partnerships; naturally this may include new partners who will introduce innovations that threaten the existing status quo. In the biomedical informatics world this resistance could come from ’single source’ or lone researchers who do not wish to share or collaborate. They tend to want to build a platform that suits their needs, a situation in which reuse and scalability are not considered high priorities. Technology providers who have a vested interest in 2nd Generation technology are another source of resistance. Many suppliers will insist that a ‘consumer-grade’ platform can be built by purely extending their existing 2nd generation technologies. In reality the technology in 2nd generation models is not designed to scale at the required rate and in addition the proprietary nature and associated licensing costs are not collaborative by design. Conclusions It becomes evident that to create wealth an AHSN should consider focusing on building an open business model that addresses the long tail market of the healthcare system. This is different from building a model that focuses only on optimisation of the current operating model, or a model where only one organisation receives maximum profit. Earlier adopters in this new marketplace are building and investing in an information platform that allow collaboration to take place both at the biomedical informatics level and relationship level. Collaborating with industry partners who have a history of driving common platforms becomes attractive. In addition, collaboration with a strong brand is vital to drive use of the platform. Wealth will be created both from high-value jobs, such as data scientists and application developers, and from the creation of new information services for researchers and clinicians. These services could, and should, extend outside the health service and be offered and consumed by pharmaceutical and CRO organisations. If personalised drugs are to be developed at speed, then it becomes evident that the business models of these related industries also need to transform as the world moves from blockbuster drug creation to more targeted drug creation based on molecular medicine. Early indications are that the UK is leading the charge globally in embracing open business models and executing on a ‘consumer-grade’ biomedical informatics platform. If we are to truly have transformational impact on healthcare delivery we need the new AHSN structure to accelerate this work. One final point, deploying wealth creation strategies has the potential to create tension within the AHSNs between industry partners and the clinical faculty. At all times these collaborations should not lose sight of the primary goal, which is to improve patient outcomes. As Medical Director at Aridhia, Dr Kelly provides strategic clinical leadership and has responsibility for ensuring the content of Aridhia’s analytical services matches the clinical expectations of clients. She manages the multidisciplinary product strategy team and liaison with the external faculty of clinicians and research fellows. She has over 25 years’ experience in healthcare, spent 12 years as consultant in Acute and High Dependency Medicine at Edinburgh Royal Infirmary and was national clinical lead for eHealth at Scottish Government for three years. Dr CATHERINE KELLY MBChB, FRCP, FFAEM Medical Director Aridhia Chris is a business transformation practitioner having built and transformed several software, hardware and services businesses for EMC. In his role as CTO he is an international speaker on how technology and data can be utilized for business model innovation. He builds collaborative networks of organisations to take advantage of the 3rd generation of computing. Chris holds a st Class Degree in Computing and Information Technology (BScHons) specializing in artificial intelligence. He is a member of the British Computer Society (MBCS) and is qualified both as a Chartered Engineer (CEng) and Chartered Information Technology Practitioner (CITP). CHRIS ROCHE CENG, CITP, MBCS Chief Technology Officer EMC EMEA An experienced Nurse and Midwife with 16 years knowledge and practice of quality assurance and corporate governance within a range of healthcare organisations. Kim joined Aridhia as Chief Privacy Officer in 2012. Kim has a wide range of healthcare experience, having held a range of clinical and managerial roles, as well as advisory positions at both NHS board and government level. She was previously the Information Governance Lead within the eHealth Division of Scottish Government Health and Social Care Directorates, where she advised Ministers and policy colleagues on information governance issues. KIM KINGAN Chief Privacy Officer Aridhia