Stefan Larsson - The Patient Priority (McGraw-Hill, 2023) ***½

An excellent book on Value-Based Healthcare written by three consultants of the Boston Consulting Group. Many of the ideas they suggest, I agree with, and they can also be found in my own book "De Stem van de Patiënt" (Lannoo, 2025). As the former co-chair of the European Alliance for Value in Health, I can only support the angle of approach to look at healthcare from an outcomes-based model instead of a service-based model. Originally, healthcare consisted of individual physicians offering care to individual patients, using technology that had been approved by the autorities. Today, healthcare has become much more complex, with many more interventions, stakeholders and integration of care services. All the costs were evaluated by the service provided and the cost of the technology. This is absolutely unsustainable, and other forms of payments are needed: bundled payments, capitation or other approaches that look more at the total picture, more collectively and based on the results obtained. 

They also plead for better integration of care, by type of disease or condition, and based on solid registries. 

"In the past, outcomes measures have traditionally been developed by spe­cialty societies and, therefore, tend to focus on specific interventions or procedures. Sometimes, focusing on a specific procedure makes sense. Cataract surgery is probably the best example, because it is the only treat­ment for patients suffering from cataracts. But in most situations, the ideal health outcomes to track for a given condition should reflect the overall care for a patient's medical condition, in which multiple specialties are usu­ally involved and multiple treatment options are available, so clinicians can assess the relative effectiveness of different types of treatment. Procedure­-based registries have played an important role in improving hip and knee arthroplasty, but they can't really address the broader question about the optimal treatment for the underlying disease of osteoarthritis. Or consider a patient suffering from back pain: for that condition, the relevant out­comes measures should be broad enough to assess the comparative impact of, say, physical therapy versus surgery." (p.56)

This approach should look at the entire patient pathway from prevention to end of treatment. Today, care is really a step-by-step approach, with none of the steps seen as being part of a disease continuum. Obviously the reality is different, and patients also live in a world where they are confronted with other problems that does not always make treatment optimal.  

"An approach to care delivery that integrates both clinical interventions along the entire treatment pathway and nonclinical interventions that encourage prevention and address the social and behavioral determinants of health is not only a more effective way to monitor and treat patients, it also allows for better coordination across multiple stakeholders and gives health systems full visibility of the system costs to make informed trade­offs-for example, investing in preventive care to avoid high treatment costs at later points in the care-delivery value chain." (p. 74)

The Netherlands for instance, had a visionary idea, that we can fully support, based on the following four essential points. Whether this has actually been done, I have not been able to verify. 

1. "To reach a consensus among key stakeholders by 2022 on the out­comes to be measured for conditions representing 50% of the total disease burden, both by adapting international standards for use in the Netherlands and by developing new metrics
2. To support shared decision-making on treatment choices between providers and patients, by making health information more under­standable for patients, and· by equipping health professionals with the necessary skills and information to have meaningful conversa­tions about treatment choices with their patients
3. To promote the outcome-based reorganization of care delivery and reimbursement through the sharing of best practices, the devel­opment of more integrated care chains, and the encouragement of more outcome-based contracts between insurers and providers
4. To facilitate better access to relevant and up-to-date outcome information, through the development of a state-of-the-art health informatics infrastructure, with the goal of making it easy for patients to report data, ensuring that data is well-organized and scalable, promoting access for all relevant parties for the purposes of benchmarking and research, and maintaining privacy and security" (p. 216)

Even if I can agree on most of what the authors write, they still cannot capture the patient perspective on things. Their approach is one of change management for the healthcare system, and of course they are self-interested consultants hoping to get clients among governments to help reorganise their healthcare towards better outcomes and more financially sustainable, yet they somehow miss the essence: patients and the patient community by disease are the real decision-makers when it comes to determining key performance indicators for outcomes, and to assess whether the expected results have been achieved. Without a solid and formal integration of the voice of patients in healthcare, it will remain a structure with one blind spot, and a big one: what patients need. Without systematic and robust feedback from the end users, no system can properly function. 

Because of this lack of patient perspective, there is also barely any mention of patient advocacy or patient organisations in their analysis, which is disturbing to say the least. As representatives of the 'lived experience' we can advocate for better adherence, better alignment with the life goals of individuals, helping to capture patient satisfaction data, etc, etc. 

That is what we are advocating for. That is where the low-hanging fruit is to be found. 

Greet De Cock & Philippe Meersseman - Grenzen Aan Genezen (Lannoo Campus, 2024) ***

In dit zeer relevante boek stellen verpleegkundige Greet De Cock en arts Philippe Meersseman terecht de vraag waar de grenzen liggen van onze zorg. Hun bekommernis komt vooral van hun ervaringen met patiënten die ten allen koste behandeld blijven, zelfs al is de levenskwaliteit of de overlevingskans van deze mensen na behandeling zeer laag. We hebben naar aanleiding van de lancering van dit boek een gesprek gehad met een tiental specialisten vanuit verschillende stakeholdergroepen, uiteraard inclusief beide auteurs. 

Als we alleen naar de cijfers kijken, dan blijkt de toekomst er niet rooskleurig uit te zien: "Tegen 2050 zal het aantal 80-plussers verdubbelen. Dat is een stijging van 640.000 in 2024 naar 1,2 miljoen over 25 jaar. Samen met de leeftijd nemen ook de chronische gezondheidsproblemen toe. Van de huidige 80-plussers heeft bijvoorbeeld 20% dementie, bij 90-plussers is dat dubbel zoveel. In 2023 zijn er in Vlaanderen ongeveer 130.000 mensen met dementie, in 2040 zal hun aantal toegenomen zijn tot 190.000". 

Tijdens onze discussie kwamen we al snel tot de vaststelling dat verschillenden onder ons begrepen hadden dat de auteurs wensten dat mensen na een bepaalde leeftijd niet meer behandeld zouden moeten worden, wat duidelijk niet hun insteek is. Het gaat wel om het correct te kunnen inschatten wat de mogelijkheden zijn van een individu na behandeling, en welke begeleiding mensen zouden moeten kunnen krijgen, zowal qua correcte informatie, als bij ondersteuning bij een keuze voor al dan niet verder behandelen. 

Ze geven heel veel voorbeelden in hun boek, en ik veronderstel dat elke lezer er nog tientallen kan aan toevoegen. Mijn schoonmoeder heeft voor euthanasie gekozen nadat bij haar abdominale kanker was vastgesteld. Het was een impactvolle maar waardige en zinvolle keuze van haar. Mijn schoonvader heeft de ziekte van Parkinson en hij wil dood, maar is onvoldoende wilsbekwaam. Dus blijft hij maar in het systeem zitten (driedubbele bekkenbreuk na val, incontinent, verschillende opnames in verschillende ziekenhuizen, waar hij agressief wordt, dan naar een WZC waar hij diep ongelukkig is, nu terug thuis maar met permanente begeleiding en zorg wat ook niet langer mogelijk is). En mijn moeder van 91 is nog in goede gezondheid, en heeft vorig jaar beslist te stoppen met tennissen omdat ze er uiteindelijk toch moe werd als ze match speelde. Ze woont alleen, rijdt nog met de auto, doet nog vlot alle administratie voor zichzelf, en bereddert zich prima. 

Er zijn geen goede antwoorden. Elk individu is anders. Maar als iemand die veel met patiënten bezig is als vertegenwoordiger van enkele organisaties, vind ik wel dat de mogelijkheid tot keuze van euthanasie sterk moet uitgebreid worden. Ik heb de mensonwaardige aftakeling gezien bij mijn eigen vader, en nu bij mijn schoonvader. Hoeveel leed kan worden bespaard, hoeveel leed kan de directe familie worden bespaard, en hoeveel capaciteit verkwisten we in onze zorg aan mensen die niet meer willen leven, maar buiten de wettelijk toegelaten criteria vallen voor euthanasie. We moeten dit debat als samenleving durven aangaan. Vandaar dat dit boek een goede insteek geeft. 

Welke politici durven dit debat mee aangaan? 

Dan Goodley - Disability and Other Human Questions (Emerald, 2021) ***

British researcher and disability advocate has published this interesting book full of new insights without being to scientific in his approach, but rather using a more personal and human style. As a patient advocate myself, I found his more scientific work very relevant for my advocacy work, and I'm sure many people, disabled or not, ill or not, will benefit from his insights. He argues that next to the organised care that the state provides to people stands the self-reliance of the individual to deal with these services that are offered. Yet he also argues for a third element, the presence of "the community", the need for connectivity that every human being needs, but especially so for disabled people. 

Just to highlight one passage, but of course there are many more that are noteworthy in this book: 

"What I am suggesting is that disability opens up possibilities for rethinking desire and, in particular, the desire for connection. Like belonging, connection acknowledges our need for others and others' need for us. Disabled people have magnified the importance of these interconnections through their political movements, their arts, their culture and their history. Take these connectivities that are commonly found in the world of disability: human-animal (in the case of guide or service dogs), human-machine (when one considers the use of wheelchairs and other prosthetics) and human-human (in the case of personal assistance or support workers). These exemplify what Barbara Gibson (2006) calls 'disability connectivities'. The centrality of connectivity, care and support in the lives of many disabled people has emphasised the human gains of partnership, community building and interdependence. This latter term, Solveig Reindall (1999) has argued, recognises that we are all situated and embedded in a host of communities. And to pursue interdependence unveils new kinds of desire. 'Desire itself', Margrit Shildrick (2007, p. 242) writes, 'is no longer figured in terms of lack but is always directed outwards' to establish ever renewed zones of connection. Our capacities as human beings- the things we can and cannot do-are always contextual and relational". (p. 50)

Inspirational and valuable. 

Ignaas Devisch - En Nog Een Goede Gezondheid (VUBPress, 2023) ***½

Het is altijd verfrissend om filosofen een diepgaandere analyse te maken van de zaken waar we dagelijks mee bezig zijn, in mijn geval de belangen van patiënten te behartigen. 

Hij probeert volgende twee vragen te beantwoorden in dit ongeveer tachtig bladzijden dikke boekje: 

1. Welk gezondheidsbegrip overheerst in onze samenleving en hoe bepaalt dat ons individuele handelen? 
2. Hoe kunnen we de relaties begrijpen tussen dat gezondheidsbegrip, politieke macht en de individuele verantwoordelijkheid in deze context? 

Hij analyseert het spanningsveld en de vele paradoxen die er zijn in de context van onze gezondheid, zoals het belang van preventie kennen, maar er niet naar handelen, of gezondheid zo belangrijk vinden dat het een prestatiegericht doel wordt, of de maatschappelijke verantwoordelijkheid en financiële bijdrage van iemand die rookt versus iemand die zijn been breekt bij het sporten, of nog het verschil in toegankelijkheid en gelijkheid. Hij brengt ons, met de hulp van vele andere filosofen, van Aristoteles over Nietzsche tot meer hedendaagse denkers, tot de grenzen van onze gezondheidsvraag. 

Hij legt fijn uit hoe het concept van gezondheid 'vloeibaar' is, en wat we nu belangrijk vinden verschilt doorheen de tijd en dat we binnen vijf jaar waarschijnlijk al weer een heel andere maatstaf gaan hebben. 

Gelukkig hebben we vandaag - en dat is mijn mening - een sociaal en solidair systeem vanuit de organisatie van de zorg, toegankelijk voor iedereen, dat tegelijk ook zeer liberaal is, want iedereen heeft de vrijheid van handelen en keuzes te maken (burger, patiënt, arts, ...). Deze beide peilers behouden lijkt me essentieel. Het is wel nodig om de patiënten meer en beter te wapenen om hun keuzes te maken. 

Niemand kiest ervoor om ziek te worden. Ziekte is dus iets waar mensen niet mee bezig willen zijn en liefst zo weinig mogelijk geld aan willen besteden, dit in tegenstelling tot zaken die hen wel onmiddellijk genot of aanzien verschaffen. Ook daar kan mijn inziens een verschuiving plaatsvinden. 

Andrew Doig - This Mortal Coil - A History Of Death (Bloomsbury, 2022) ***

Andrew Doig is Professor of Biochemistry at the University of Manchester. He studied Natural Science and Chemistry at the University of Cambridge, and Biochemistry at Stanford University Medical School. He became a lecturer in Manchester in 1994, where he has been ever since. In "This Mortal Coil", he gives an overview of how disease resulting in death impacted society throughout the ages. It is not about how people perceived death or how the concept of death changed throughout history. The subtitle would have been more accurate if it had been "The History of Medicine". 

The book's title comes from the famous Hamlet speech of "To Be or Not To Be", “What dreames may come, When we haue shufflel'd off this mortall coile, Must giue vs pawse.”

Doig is a scientist, not a historian, but that shows more in the second part of the book. The first part gives overviews of what people died from, based on the first epidemiological data, however basic they may have been, and with the sometimes impossible challenge to understand what the actual disease was in today's jargon. He also gives an overview of how the science evolved, how disease was looked upon, but also the first breakthroughs in medicine itself. The essence of the following story was known to me, but not with this much detail. 

"In 1796 a milkmaid called Sarah Nelmes came to Edward Jenner, a country doctor from Gloucestershire, with a rash on her right hand. Sarah told Jenner that one of her Gloucester cows called Blossom had recently been infected with cowpox. Jenner knew that milkmaids often developed blisters on their hands after working with cow udders that were infected with cowpox. Sarah had most pustules on the part of her hand that handled Blossom's udder.6 It was widely believed that milkmaids never got smallpox due to exposure to cowpox, but Jenner resolved to test the old wives' tale directly. He extracted some pus from the blisters on Sarah's hands, which he proceeded to inject into eight-year-old James Phipps, the son of his gardener, giving him a mild case of cowpox. Phipps was then deliberately injected with smallpox on multiple occasions. Fortunately, he was unharmed. 

Jenner followed up this promising result on a hundred other children and himself, again with complete success. In 1798, Jenner published his findings in a book entitled An Inquiry into the Causes and Effects of Variolae Vaccinae6 and named his procedure 'vaccination', after the Latin word for cow: vacca."

Vaccination became a major advance in the decrease of mortality, together with better hygiene and sanitation.  

As another striking example of the progress we made, he also explains how the Chamberlen family kept their invention of the forceps a secret, despite the fact that it saved the lives of many babies and their mothers during childbirth. One interesting story about hygiene in this context is the death rate in the two maternities in Vienna in 1846, one led by physicians, the other by midwives. The former had a 10% death rate, the latter only 4%. The explanation was that the physicians training their students also performed autopsies in between deliveries, without washing hands or sterilising equipment. 

He also emphasises other important factors such as nutrition and the necessary intake of nutrients for cognition, growth and avoiding diseases. Many diseases could be prevented and treated globally by very cheap solutions that are currently not high on the public health agenda. This is not only the case in developing countries, but in my personal opinion also very much the case in our current medical practice even in the richest countries. 

He also expands on the value of the scientific method, with James Lind doing control studies to compare the nutrition of sailors who suffered from scurvy and those who didn't, or John Snow who did one of the first epidemiological studies on cholera in London. 

The book ends with the big health challenges of our time, including the latest high level insights into medical science and its possible solutions. 

Doig's book is well-written, educational and entertaining at the same time.