Resources by Episode

EPISODE ONE

The Choice: A First Look

  • The September 2024 Independent investigation of the NHS in England conducted by Lord Darzi details the causes and extent of the crisis. Despite the challenges, the Darzi Report finds that the NHS’s vital signs remain strong… and looks forward to the ‘collective endeavour to turn it around for the people of this country, and to secure its future for generations to come’.

    See also the LSE-Lancet Commission on the future of the NHS published in 2021.

    For an insightful analysis from a transatlantic team of authors, see Lessons from England’s National Health Service. Austerity and underinvestment, centralisation of control enabling multiple reorganisations of the system, disempowered and demoralised professionals, and the vulnerability of primary care in serving older and sicker populations are highlighted as causes of the declining performance of NHS England… and as a cautionary tale for other health systems.

  • Shared decision-making emerged 4 decades ago as the constructive professional response to geographic variations in clinical practice. The goal was to raise decision quality by minimising unwarranted variation while honouring warranted variation in patients’ informed preferences. Patients’ Preferences Matter: Stop the Silent Misdiagnosis was published in 2012 by the King’s Fund to examine the implications of practice variation and shared decision-making for NHS commissioning and capital investments.

    Also see Making Shared Decision Making a Reality which describes shared decision making as the micro-commissioning for individual patients needed to inform macro-commissioning at the system level.

  • In 2013, the King’s Fund published Delivering Better Services for People with Long-term Conditions: Building the House of Care to define personalised care planning as clinicians and patients working together using shared decision-making to agree goals, identify support needs, develop and implement action plans, and monitor progress over time. The author’s characterised individual patient choices made via this process as the micro-level commissioning that informs macro-level commissioning.

  • The May 2024 report from The Health Foundation – The Public’s Views on the Future of the NHS in England – documents public dissatisfaction with the NHS. Supporting the workforce is a top priority for the public.

    Also see Public Satisfaction with the NHS and Social Care in 2022. More than half of respondents were dissatisfied with the NHS, with a decline seen across all ages, income groups, sexes and supporters of different political parties. But there was strong support for the founding principles. Dissatisfaction with social care services was greater - just 14 per cent of respondents said they were satisfied with social care.

  • The 2023 Eurohealth article – From Great Attrition to Great Attraction: Countering the Great Resignation of Health and Care Workers – describes a vicious circle of stress, burnout, and attrition that can be characterised as ‘The Great Leaving’. See this report on the role of moral injury in US health care worker burnout and leaving.

  • The September 2024 Commonwealth Fund report –  Mirror, Mirror 2024: A Portrait of the Failing U.S. Health System – compares health system spending as a percentage of GDP and performance for 10 countries. Spending in 2023 was 16.5% in the US and ranged from 9.8% to 11.9% in the nine other countries with the UK and Sweden both at 10.9%.  For system performance in five areas (access to care, care process, administrative efficiency, equity, and health outcomes), the UK ranked 3rd overall because of strengths in access/affordability, equity and administrative efficiency. It compared less favourably in care processes and outcomes.

    The November 2022 Health Foundation Report - How does UK health spending compare across Europe over the past decade? – found average day-to-day health spending per person in the UK during 2010-19 was 18% below the EU14 average. The UK tracked further behind EU14 countries on average investment in health capital as a share of GDP during that period.

  • The 2014 Five Year Forward View proposed a triple integration of primary with acute, mental health with physical health, and health care with social care to better meet needs at the individual and population levels. But the new ways of working required to make high quality integrated care decisions at the frontlines have not been implemented at scale.

    Next Steps for Integrating Primary Care: Fuller Stocktake Report sets the agenda for achieving integrated primary care. The Stocktake was led by Dr Claire Fuller, a GP and CEO of the Surrey Heartlands ICS at the time of its publication in 2022 when it was accompanied by a letter of support from all 42 ICS CEOs. Dr Fuller was appointed National Primary Care Medical Director for NHS England in 2023.

EPISODE TWO

Five Levels of Decision Quality

  • Patients’ Preferences Matter: Stop the Silent Misdiagnosis, cited as a resource for Episode 1, was commissioned by the King’s Fund after The Need to Confront Practice Variation was commissioned by the BMJ. It reviews the effect of regional supply on rates of intervention, the complexity of decision-making in the face of uncertainty, and the biases that underlie unwarranted variation. It then makes the case for measuring decision quality in primary care.

  • Understanding options is important because treatments involve trade-offs between benefit and harm, and different people feel differently about the same trade-offs. They also feel differently about the same risks and the timing of good and bad health states. Differences in risk attitude are especially important when there is potential for serious harm including death. Time trade-offs are especially important when the choice is whether to change near-term behaviour for future health gains. Making Shared Decision Making a Reality describes the conversations needed for clinicians to help patients understand their options and the trade-offs in the context of their own lives. It also describes shared decision making as the micro-commissioning for individual patients needed to inform macro-commissioning at the system level.

    New approaches to measurement and management for high integrity health systems describes Dartmouth’s early efforts working with NHS vanguards to challenge assumptions and define design principles to support personalised care by learning from patients at the system level. 

  • Clinical care may well be the most complex business on earth. Rarely can decisions be made and implemented alone. The professional agency of those who have the expertise and skill must be balanced with the personal agency of those who will live with the consequences. Those interested in the origins of shared decision-making might enjoy these three papers published together in 1988: 1. Symptom Status and Quality of Life Following Prostatectomy, 2. Watchful Waiting vs Immediate Transurethral Resection for Symptomatic Prostatism: The Importance of Patients' Preferences, and An Assessment of Prostatectomy for Benign Urinary Tract Obstruction: Geographic Variations and the Evaluation of Medical Care Outcomes.

    For a more technical view of the relevant decision theory, see Assessing patients' utilities. Can the ends justify the means?

    For a wider lens on the bloody difficulty of clinical decision-making, see Better Doctors, Better Patients, Better Decisions, edited by Gerd Gigerenzer and Muir Gray. Chapter 3 describes the origins and system-wide implications of decision quality.

  • The first NHS Atlas of Variation in Healthcare was published in 2010. It began with a robust call to insight and action before addressing variation across 18 different specialisms. For example, the Atlas showed that expenditures on musculoskeletal conditions per 1000 population ranged from £40,000 to £120,000. Subsequent ‘compendium’ Atlases of similar breadth were published in 2011 and 2016.  

    The Dartmouth Atlas of Health Care series began in 1996 and now comprises nearly 70 atlases focused on different clinical conditions, or populations defined by condition(s) or geographic area. 

    Global variation is marked by differences in per capita spending on health care, especially across low- and middle-income countries. The Global Role of Health Care Delivery Science: Learning from Variation to Build Health Systems that Avoid Waste and Harm addresses the failure to realise the 1978 Declaration of Alma Ata promoting community-oriented primary care, and then describes opportunities to reduce waste and harm by learning from outcome and practice variation.

  • Audit of coronary angiography and bypass surgery used appropriateness criteria developed in the UK and found that only 55% of surgeries could be deemed appropriate. The rationale for these criteria was questioned in What is inappropriate care? For example, when the UK criteria were applied to medical records in US charts, 35% of indications were considered inappropriate by UK panelists’ ratings instead of 14% by the US panelists’ rating criteria.

    Are hospital services rationed in New Haven or over-utilised in Boston? The populations of New Haven and Boston are demographically similar and receive most of their hospital care in university hospitals, but in 1982 expenditures per head for inpatient care were $451 and $889, respectively. The overall rates for major surgery were equal, but rates for individual operations varied widely. The Boston/New Haven ratio was 2.3 for carotid endarterectomy, but 0.49 for coronary bypass surgery.

  • The Implications of Regional Variations in Medicare Spending demonstrated that regional differences in Medicare spending are largely explained by the more inpatient-based and specialist-oriented pattern of practice observed in high-spending regions. Neither quality of care nor access to care appear to be better for Medicare enrolees in higher-spending regions.

    In The Cost Conundrum, Atule Gawande described in 2009 a professional culture in McAllen, Texas that contributed to per capita health care expenditures twice those in El Paso, Texas which was similar demographically. In Overkill he described a 2015 return visit when he found positive shifts in the McAllen clinical culture attributable in part to a constructive response from primary care teams.

  • Gwyn Bevan’s discussion of bringing stakeholders together to assess allocative efficiency is explained with technical detail in Healthcare prioritisation at the local level: a socio-technical approach.

    In a brief video, The STAR approach to Allocative Efficiency, Gwyn illustrates STAR assessment of quality of life among stakeholders with conditions as diverse as bipolar disease, back pain, and breast cancer. There is an excellent illustration of value triangles in the COPD example Gwyn used in the podcast.

EPISODE THREE

A Wider Set of Options

"File:Statue of Sister Dora - geograph.org.uk - 682348.jpg" by Derek Bennett is licensed under CC BY-SA 2.0.

  • As Cochrane Library namesake, Archie Cochrane’s legacy is secure across the globe. But as noted in Episode 3, you may want to learn more about him by reading his memoir, One Man’s Medicine. 

  • When a person suffering from severe or long-lasting loneliness sees a GP, they are more likely to present with signs of depression or a physical symptom than to name loneliness because they don’t recognize it as the root cause or because of associated stigma. All too often the clinician offers a medical intervention instead of the needed emotional and social support. All the Lonely People, is a resource from The Mental Health Foundation that addresses stigma and many other facets of loneliness.

  • A Framework for NHS Action on Social Determinants of Health from the Health Foundation distinguishes approaches to address social needs within the NHS (1) by whether they target individuals or populations, and (2) by whether they are implemented by the NHS or by the NHS in partnership. When addressing needs of individuals within the NHS, the authors note the role of shared decision-making and the need for health workforce training and education. This long read is a well-referenced resource for thinking about how to put more emotional, social and cultural intelligence… and more listening capacity… at decision points. 

    See also Sir Michael Marmot’s seminal work in elucidating the social determinants of health and their unequal impact within and across borders here, Health Equity in England: The Marmot Review 10 Years On, and here, The Health Gap: The Challenge of an Unequal World.

  • Examples of organisations mentioned by Anna Dixon that address social needs include the Bromley by Bow Centre, where general practice-based social prescribing began in 1997, and Bevan Health, a general practice community interest corporation (CIC) that strives to meet the needs of vulnerable populations including homeless street workers and asylum seekers in hotels. Another example is Care City in North East London focusing on healthy ageing with recruitment and upskilling of domiciliary workers from the community.

  • After nearly two decades of recruiting and supporting Community Champions, Walsall Housing Group (whg) expanded their remit to recruiting and training whg Community Health Champions.

    For a general approach to finding and leveraging community assets, see Asset-based approaches in local authorities: achieving a better balance between service delivery and community building.

  • Dartmouth Health Connect was established for Dartmouth’s employees with the recognition that as a self-insured employer with an administrative-services-only contract, Dartmouth’s CEO could make the choice to raise decision quality. Dartmouth decided to spend more on primary care, capitate primary care services, and change the primary care staffing model. The aspiration was that patients would spend much less time one-on-one with a doctor or nurse… and still be delighted by their experience. Instead of 4 GPs, 2 nurses and 4 receptionists, they recruited 2 GPs, 1 nurse, no receptionists, and 10 health coaches from the community with the relational skills to expand listening capacity in the GP surgery.

    Staffing was based on the model implemented by Rushika Fernandopulle in Atlantic City as described in Atule Gawande’s The Hotspotters and in a Dartmouth Case Study: The AtlantiCare Special Care Center.

EPISODE FOUR

Biases in Medical Decisions

  • Both clinicians and patients can do better with medical decisions when they are aware of the biases they bring to the conversation. Side Effects: How Our Healthcare Lost its Way and How to Fix It is David Haslam’s account of bias in medical decision-making from the perspective a clinician, a patient dealing with serious illness, and a policy maker responsible for supporting frontline decision quality at the national level.  

    Many of the biases are created or reinforced by the systems we design or the policies we choose. Tracking Medicine: a researcher’s quest to understand health care is Jack Wennberg’s narrative account of a 50-year career as a researcher and policy entrepreneur. See also Lancet Right Care papers, Evidence for overuse of medical services, and Levers for addressing medical underuse and overuse.

  • NICE guidelines are developed with health and care professionals, people who use services and carers. As noted by former chair of NICE, David Haslam, people have the right to be able to make informed decisions about their care based on how they feel about trade-offs.

    Because of limitations of available evidence, most guidelines address a single medical condition and/or discrete choices between several diagnostic or treatment options. When a patient has multiple long-term conditions, the number of decisions and self-management tasks can be overwhelming. The clinician and the patient must set priorities. See Delivering Better Services for People with Long-term Conditions: Building the House of Care, and A Randomized Trial of a Telephone Care-Management Strategy, which included software developed by the Foundation for Informed Medical Decision Making to support decision coaches and patients set priorities among the many self-management tasks associated with their multiple medical conditions. 

  • Professional uncertainty and the problem of supplier-induced demand reviews evidence that differences among physicians in their approach to diagnosis or in their belief in the value of interventions for meeting patient needs contribute to geographic practice variation. The authors raise questions about Kenneth Arrow’s Uncertainty and the Welfare Economics of Medical Care. Also see the NHS Atlas of Variation in Healthcare, the Dartmouth Atlas, and Tracking Medicine. These regional variations in resource availability shape local conventional wisdom and, though invisible to practitioners within regions, can bias clinical decisions from generation to generation.

  • Pleasing those you serve is fundamental to the ethos of service industries where the smallest replicable unit is the bidirectional exchange of information about what is possible and what would be valued. Motivation to please is amplified by being graded on satisfaction and by fear of legal liability. Effective shared decision-making increases patient satisfaction and has been shown in some contexts to guard against liability. But when there is too little time for a complex conversation about trade-offs, especially when the patient feels they are being deprived of an entitlement, clinicians all too often take action when doing nothing might be more advisable. See Aligning Ethics with Medical Decision-Making: The Quest for Informed Patient Choice.

  • The history of medicine is replete with interventions that in their time were new, high-tech, and exciting to clinicians who let their enthusiasm run far ahead of evidence. Examples cited in Episode 4 are surgery for prostate cancer detected by screening, and coronary artery bypass surgery.  Broken Hearts: The Tangled History of Cardiac Care reveals how trade-trade-offs for surgery were inadequately defined over decades of fashionable use with enthusiasm substituting for evidence.

  • Responding to the stunning achievements of modern medicine with unlimited expectations for what health care can do contributes to overuse when we turn life conditions into medical conditions, or succumb to expanding definitions of already prevalent conditions like high blood pressure or lipid levels, or to disease mongering for commercial gain by industry or practitioners. In each case, more time for better conversations about trade-offs and their acceptability to the individual patient is what is needed.

  • Preventable death with cancer, heart disease, and other conditions is tragic for the deceased and for loved ones left behind with the question, if only…? But screening is complex, and criteria to determine whether it should be done have been recognized for decades. Screening Programmes: A Short Guide is a valuable resource for clinicians and system leaders who want to increase effectiveness, maximize benefits and minimize harm.

    The belief in the power of medicine and the drive for early detection is evident in clinical and policy enthusiasm for personalised prevention. See Personalised prevention in England: Bridging the gap between policy rhetoric and practical reality.

    The complexity of screening decisions is mirrored in decisions about incidental findings discovered with diagnostic imaging. See again, Evidence for the overuse of medical services. In many of these cases, the information has negative value for the patient.

  • Biases lead to wasted resources… and waste in one place may deny people the care that they need and want. So, wasting resources from a common pool is not a morally neutral act. Biases we want to eliminate must be confronted in multiple ways. At the societal level, programmes like Prudent Health Care in Wales and Realistic Medicine in Scotland and address bias throughout the system.  See the Scottish Chief Medical Officer’s Report 2023/2024 – Realistic Medicine: Taking Care.

    Clinicians do better with biases when aware of them. GPs with greater listening capacity could make patients more aware of their biases and create more realistic expectations. Evidence from around the world shows the benefits of primary care. David Haslam notes: “There is really good evidence that continuity in general practice, of knowing your doctor and your doctor knowing you, reduces health care costs, early death, hospital admissions, and overuse of investigations.” See Continuity in general practice as a predictor of mortality, acute hospitalisation, and use of out-of-hours care.

    See also Continuity of Care Increases Physician Productivity for a review of the evidence on continuity benefits to the patient and an analysis demonstrating improved productivity for GPs.

EPISODE FIVE

Strengthening the Voice of the Patient

  • Learning from the patient’s voice is important at the level of the individual and the system. 

    Low-quality decisions made at the frontlines put individual patients at risk of personal harm associated with underuse and overuse. To understand the challenges at the frontlines, see again Making Shared Decision-Making a Reality, cited in Resources for Episode 2. You might also want to spend time with Angela Coulter’s book, Engaging patients in Healthcare. 

    The aggregate of services delivered to a population where high-quality decision-making is the norm provides system leaders with the critical intelligence needed to interrupt the cycle of uninformed commissioning and capital budgeting driving demand instead of the actual needs and wants of the people they mean to serve. Recall the charisma-politics-drift explanation for wacky budgets in Episode 2 and see Patients’ Preferences Matter: Stop the Silent Misdiagnosis. Also, Shared Decision Making in Health Care: Achieving evidence-based patient choice which includes a chapter about the role of SDM in allocative efficiency.   

    New approaches to measurement and management for high integrity health systems recommends design principles to capture learning from patients to achieve system sustainability. It also describes Dartmouth’s work with NHS vanguards in 2016-17.

  • Shared decision-making was introduced to researchers and policy makers as the constructive professional response to practice variation in the mid-1980s. The focus was on discrete decisions such as whether to incur risks of surgery to relieve symptoms. See again An Assessment of Prostatectomy for Benign Urinary Tract Obstruction Geographic Variations and the Evaluation of Medical Care Outcomes, which described in 1988 a way forward focusing on what was termed preference-sensitive conditions, often involving surgery to relieve symptoms.

    Over time the focus widened to include first screening decisions, and then ongoing management of long-term conditions. See Delivering Better Services for People with Long-term Conditions: Building the House of Care which described development of personal care plans as a form of micro-commissioning to inform macro-commissioning. 

    The wider focus and time frame made the social context in which people live their lives more relevant… and the continuity of a trusting relationship between patient and clinician more important.

    See again continuity in general practice and Next steps for integrating primary care: Fuller Stocktake report, which addresses personalised care for people who need it most, and the importance of systems working differently to shape their workforce while providing the digital infrastructure needed to underpin integrated primary care. 

    ‘Digital Downsides’: a discussion document from the Strategy Unit acknowledges the value of digital infrastructure in dealing with simple needs with emphasis on speed of access, diagnosis and treatment of soluble problems characterised as technical and transactional. But it also cites concerns about diminishing contextual and relational components of care critical to building mutual trust.

  • People often judge the quality of a decision made in the face of uncertainty by its outcome. But good outcomes follow bad decisions – those that are poorly informed by the probabilities of outcomes and their consequences. And bad outcomes follow good decisions that are fully informed. Better Doctors, Better Patients, Better Decisions begins with the observation that all too often both doctors and patients are ‘risk illiterate’.

    Without support in better understanding risk, patients may anticipate the regret they will feel if a decision they made is followed by a bad outcome. With support from a skilled clinician or decision coach, they are more likely to make the decision consistent with the risk attitude. The decision quality should be judged by the quality of the thought process about options and trade-offs, and the quality of the conversations about the choice. Decisional regret emerged as one of the early outcome measures of the effectiveness of shared decision-making interventions.

  • Early decision aids developed in response to geographic practice variation were very complex in their construction, evaluation, and maintenance. The Foundation for Informed Decision Making was established in 1989 to pursue the way forward described in An Assessment of Prostatectomy for Benign Urinary Tract Obstruction Geographic Variations and the Evaluation of Medical Care Outcomes. 

    Critical attributes of decision aids then and now include accurate and unbiased information based on systematic review of all available evidence. In the Foundation’s Shared Decision-Making Programs (SDPs), this information was complemented by qualitative research and a balanced presentation of past patients’ lived experience of treatments and outcomes. The goal was to support those facing the decision imagine more accurately the outcomes of different treatment choices as they constructed their treatment preferences. Elaborate supporting materials were developed for patients, clinicians, and system leaders who implemented SDPs with an interactive or linear video format. Estimated development costs for each of these early SDPs in today’s dollars were $1.5M, with annual update costs of approximately $150K per program. See The Development of Shared Decision-Making Programs. 

    Evaluations of the Foundation’s SDPs included multiple published studies that contributed to early Cochrane Library reviews. See the 2024 review, Decision aids for people facing health treatment or screening decisions.

    Evaluation of decision aids became an international effort with the founding of the International Patient Decision Aid Standards (IPDAS) Collaboration in 2003. IPDAS establishes and reviews criteria for improving content, development, implementation, and evaluation.

  • The Personalised Care Institute has an Accredited Training Menu that includes motivational interviewing as well as shared decision-making. In the US, the Agency for Healthcare Research and Quality supports a train-the-trainer model with Professional Education and Training in Shared Decision Making.

EPISODE SIX

The Choice: Step by Step

  • Regarding the financial waste and personal harm to patients, see again Side Effects, Tracking Medicine, and Evidence for overuse of medical services.

    Readers may want to learn a bit more about Peter Drucker who said: ‘There is nothing so useless as doing efficiently something that shouldn’t be done.’ A good place to start is the Drucker Institute. 

    Regarding the human cost to clinicians, see again From Great Attrition to Great Attraction: Countering the Great Resignation of Health and Care Workers and this report on the role of moral injury in US health care worker burnout and leaving.

  • Founded by Neil Modha’s parents, the Thistlemoor story is an example of necessity being the mother of invention. The demographics of the population served by the Thistlemoor team required innovation. The population was relatively young but with high prevalence of cardiovascular disease, with high rates of behavioural risk factors. Median age at a first coronary event was the youngest in Greater Peterborough. The challenge of engagement was compounded by the fact that 80% of consultations were in a language other than English. Polish and Lithuanian were the most common. See details in a presentation made by Neil Modha to the Sandwell and Black Country PCN integrated care teams that Dartmouth was working with in February 2023 - Health inequalities and opportunities with workforce.

  • To overcome the language barrier, the Modhas searched for people who spoke the languages of the people they served with two traits when hiring. First, a desire to help the community. Second, a desire to learn. A patient’s visit with the GP begins and ends with the health assistant – with the GP joining their conversation to check in on what has been learned and what is planned and to add medical expertise and redirect as needed.

    Additional health assistants to make the model work were initially paid for by the Modhas, but when the level of population need related to culture, language and deprivation was recognised by commissioners, the contract was increased by 20-25%. In an analysis conducted by an independent RightCare Delivery Partner from another ICS, the Thistlemoor practice had lower downstream costs than the average of the 20 most comparable PCNs… 45% lower cost for A&E visits, 33% lower for outpatient visits, and 42% lower for elective procedures. See Health inequalities and opportunities with workforce.

  • Addressing inequalities across communities is a key goal for integrated care leaders across England. See Asset-based approaches in local authorities: achieving a better balance between service delivery and community building.

    Beyond lived experience and listening skills, these new workers will need training… all important training, but none of it is extensive. See this Accredited Training Menu from the Personalised Care Institute.

  • Patients don’t want to be fobbed off on someone with what they see as lesser credentials. They resist teamwork that they do not see in action. See What can we learn from patients?

    They do not resist teamwork that exhibits the relational coordination of shared goals, shared knowledge, mutual respect… and communication that is frequent, timely, accurate, and problem solving. See What is Relational Coordination?

    And patients want to be included in the teamwork of relational coordination. Using patient-reported experience measures like collaboRATE and integRATE can help with bringing them onboard.