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  • 1.
    Gustavsson, Erik
    Linköping University, Department of Culture and Communication, Culture and Aesthetics. Linköping University, Faculty of Arts and Sciences.
    Characterising Needs in Health Care Priority Setting2017Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The focus of this thesis is needs in the context of health care priority setting. The notion of needs has a strong standing in health care policy; however, how the idea should be understood more specifically and how it should guide decisions about priority setting remain contentious issues. The aim of this thesis is to explore how needs should be characterised in health care priority setting. This matter is approached by, first, exploring and developing the conceptual structure of health care needs, and second, discussing and suggesting solutions to normative questions that arise when needs are characterised as a distributive principle.

    In the first article, the conceptual structure of needs in general and health care needs in particular is explored, and it is argued that a specific characterisation of health care needs is required.

    In the second article, the notion of health care needs is explored in relation to preferences for health care within the context of shared decision-making. The paper further discusses a number of queries that arise in the intersection between what the patient needs and what the patient wants.

    The third article discusses how a principle of need should handle questions about interpersonal aggregation. The paper characterises a principle of need which strikes a reasonable balance between giving priority to the worst off and the distribution of benefits with regard to interpersonal aggregation.

    The fourth article discusses how a principle of need should account for the fact that patients often are badly off due to several conditions rather than one single condition. It is argued that how badly off patients are should be understood as a function of how badly off these patients are when all of their conditions (for which they need health care) are considered.

    The frame story provides the terminological, theoretical, contextual, and methodological background for the discussion undertaken in this thesis. The conclusions of the articles are brought together and the discussion extended in the concluding discussion by sketching a number of conditions of adequacy for the concept and principle of need relevant for health care priority setting.  

    List of papers
    1. From Needs to Health Care Needs
    Open this publication in new window or tab >>From Needs to Health Care Needs
    2014 (English)In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 22, no 1, p. 22-35Article in journal (Refereed) Published
    Abstract [en]

    One generally considered plausible way to allocate resources in health care is according to people’s needs. In this paper I focus on a somewhat overlooked issue, that is the conceptual structure of health care needs. It is argued that what conceptual understanding of needs one has is decisive in the assessment of what qualifies as a health care need and what does not. The aim for this paper is a clarification of the concept of health care need with a starting point in the general philosophical discussion about needs. I outline three approaches to the concept of need and argue that they all share the same conceptual underpinnings. The concept of need is then analyzed in terms of a subject x needing some object y in order to achieve some goal z. I then discuss the relevant features of the object y and the goal z which make a given need qualify as a health care need and not just a need for anything.

    Place, publisher, year, edition, pages
    Springer, 2014
    Keywords
    Harm; Health; Health care; Health care need; Need; Priority-setting; Rationing; Well-being
    National Category
    Philosophy, Ethics and Religion Other Medical Sciences
    Identifiers
    urn:nbn:se:liu:diva-106476 (URN)10.1007/s10728-013-0241-8 (DOI)000331640900003 ()
    Available from: 2014-05-08 Created: 2014-05-08 Last updated: 2018-01-10Bibliographically approved
    2. Health-care needs and shared decision-making in priority-setting
    Open this publication in new window or tab >>Health-care needs and shared decision-making in priority-setting
    2015 (English)In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 18, no 1, p. 13-22Article in journal (Refereed) Published
    Abstract [en]

    In this paper we explore the relation between health-care needs and patients desires within shared decision-making (SDM) in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring out and discuss a number of queries which seem to arise due to the double focus on a patients need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine.

    Place, publisher, year, edition, pages
    Springer Verlag (Germany), 2015
    Keywords
    Needs; Health-care needs; Shared decision-making; Desires; Priority setting; Rationing
    National Category
    Clinical Medicine
    Identifiers
    urn:nbn:se:liu:diva-114234 (URN)10.1007/s11019-014-9568-7 (DOI)000347699000003 ()24807745 (PubMedID)
    Available from: 2015-02-16 Created: 2015-02-16 Last updated: 2019-06-27Bibliographically approved
    3. Principles of Need and the Aggregation Thesis
    Open this publication in new window or tab >>Principles of Need and the Aggregation Thesis
    2019 (English)In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 27, no 2, p. 77-92Article in journal (Refereed) Published
    Abstract [en]

    Principles of need are constantly referred to in health care priority setting. The common denominator for any principle of need is that it will ascribe some kind of special normative weight to people being worse off. However, this common ground does not answer the question how a plausible principle of need should relate to the aggregation of benefits across individuals. Principles of need are sometimes stated as being incompatible with aggregation and sometimes characterized as accepting aggregation in much the same way as utilitarians do. In this paper we argue that if one wants to take principles of need seriously both of these positions have unreasonable implications. We then characterize and defend a principle of need consisting of sufficientarian elements as well as prioritarian which avoids these unreasonable implications.

    Place, publisher, year, edition, pages
    Springer, 2019
    Keywords
    Aggregation, Needs, Principles of need, Prioritarianism, Priority setting, Sufficiency
    National Category
    Ethics
    Identifiers
    urn:nbn:se:liu:diva-144208 (URN)10.1007/s10728-017-0346-6 (DOI)000466950700002 ()28866792 (PubMedID)2-s2.0-85028766963 (Scopus ID)
    Available from: 2018-01-10 Created: 2018-01-10 Last updated: 2019-06-23Bibliographically approved
  • 2.
    Gustavsson, Erik
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    From Needs to Health Care Needs2014In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 22, no 1, p. 22-35Article in journal (Refereed)
    Abstract [en]

    One generally considered plausible way to allocate resources in health care is according to people’s needs. In this paper I focus on a somewhat overlooked issue, that is the conceptual structure of health care needs. It is argued that what conceptual understanding of needs one has is decisive in the assessment of what qualifies as a health care need and what does not. The aim for this paper is a clarification of the concept of health care need with a starting point in the general philosophical discussion about needs. I outline three approaches to the concept of need and argue that they all share the same conceptual underpinnings. The concept of need is then analyzed in terms of a subject x needing some object y in order to achieve some goal z. I then discuss the relevant features of the object y and the goal z which make a given need qualify as a health care need and not just a need for anything.

  • 3.
    Gustavsson, Erik
    et al.
    Linköping University, Department of Culture and Communication, Culture and Aesthetics. Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Juth, Niklas
    LIME, Stockholm Centre for Healthcare Ethics, Karolinska Institutet, Stockholm, Sweden..
    Principles of Need and the Aggregation Thesis2019In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 27, no 2, p. 77-92Article in journal (Refereed)
    Abstract [en]

    Principles of need are constantly referred to in health care priority setting. The common denominator for any principle of need is that it will ascribe some kind of special normative weight to people being worse off. However, this common ground does not answer the question how a plausible principle of need should relate to the aggregation of benefits across individuals. Principles of need are sometimes stated as being incompatible with aggregation and sometimes characterized as accepting aggregation in much the same way as utilitarians do. In this paper we argue that if one wants to take principles of need seriously both of these positions have unreasonable implications. We then characterize and defend a principle of need consisting of sufficientarian elements as well as prioritarian which avoids these unreasonable implications.

  • 4.
    Gustavsson, Erik
    et al.
    Linköping University, Department of Culture and Communication, Arts and Humanities. Linköping University, Faculty of Arts and Sciences.
    Juth, Niklas
    Centre for healthcare ethics, Karolinska institutet, Solna, Sverige.
    Munthe, Christian
    Institutionen för filosofi, lingvistik och vetenskapsteori, Göteborgs universitet, Sverige.
    Sandman, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences. Institutionen för vårdvetenskap, Högskolan i Borås, Sverige.
    Etiska och praktiska utmaningar med ökat patientinflytande2015In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 112, article id DD3XArticle in journal (Other academic)
    Abstract [sv]

    Det finns ett ökat intresse för patientinflytande i vården. Ett sådant fokus kan dock komma i konflikt med ett antal värden/praktiker inom vården. I denna artikel identifierar vi att följande värden/praktiker kan påverkas: 

    Idén om patientens vårdbehov förefaller tappa sin moraliska och politiska ställning. 

    Prioriteringar på gruppnivå kan bli svårare att tillämpa på individnivå. 

    Det kan bli svårare att bedöma nyttan med behandlingar. 

    Det kan bli svårare att få fram evidens för behandlingar. 

    Det tycks komplicera idén om den följsamme patienten. 

    Det kan innebära vissa implikationer för resursanvändning. 

    Det kan ge ett nytt perspektiv på idén om att prioritera efter en ansvarsprincip.

  • 5.
    Gustavsson, Erik
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Sandman, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Etisk analys av pre-expositionsprofylax (PrEP) för hiv2018Report (Other academic)
    Abstract [sv]

    Föreliggande etiska analys rör pre- expositionsprofylax (PrEP) mot hiv som en hivnegativ person kan ta för att minska risken för att drabbas av en hivinfektion. Om PrEP tas som ordinerat ger det en ungefärlig skyddsgrad mot hiv på 85 % jämfört med en kontrollgrupp. Eftersom PrEP inte ger 100 % skydd och inte heller skyddar mot andra sexuellt överförbara sjukdomar så är rekommendationen att det tas i kombination med praktiserandet av säkert sex.

    Den här etiska analysen har gjorts på uppdrag av NT-rådet och behandlar följande två frågeställningar: 1) finns det etiska skäl som talar emot förskrivning av PrEP; (2) hur bör PrEP prioriteras i relation till den etiska plattformen med ett särskilt fokus på huruvida PrEP bör egenfinanseras. Det finns starka skäl att minska smittspridningen av hiv utifrån såväl ett individ- som ett samhällsperspektiv vilket talar för förskrivning av PrEP. I diskussionen kring PrEP har det dock framförts att PrEP skiljer sig från annan preventiv behandling för att minska smittspridning på ett sätt som talar emot att PrEP förskrivs. Den etiska analysen diskuterar ett antal sådana argument: att friska personer utan medicinskt behov behandlas, att det handlar om ett socialt riskbeteende, att individer själva bör ta ansvar för smittspridning genom att ändra sitt beteende, samt risken för resistensproblematik. Slutsatsen är att inte något av dessa motargument är tillräckligt starkt för att tala emot förskrivningen av PrEP.

    När det gäller prioritering av PrEP i relation till den etiska plattformen dras slutsatsen att PrEP hamnar i den lägre delen av prioriteringsskalan baserat på svårighetsgraden hos tillståndet som PrEP riktar sig emot. Det innebär att PrEP skulle kunna vara en kandidat för egenfinansiering.

    Eftersom den etiska plattformen säger mycket lite om vilka åtgärder som bör egenfinaiseras så har analysen utgått från två ramverk presenterade i den internationella literaturen. Trots att flera aspekter av dessa ramverk talar för att PrEP skulle vara passande för egenfinansiering så väger aspekten av minskad smittspridning tungt. Dessa positiva externa effekter tillsammans med svårigheten att bedöma huruvida patientpopulationen skulle kunna egenfinansiera PrEP bidrar till bedömningen att PrEP bör finansieras inom ramen för det offentliga åtagandet.

  • 6.
    Gustavsson, Erik
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Sandman, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences. University of Boras, Sweden.
    Health-care needs and shared decision-making in priority-setting2015In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 18, no 1, p. 13-22Article in journal (Refereed)
    Abstract [en]

    In this paper we explore the relation between health-care needs and patients desires within shared decision-making (SDM) in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring out and discuss a number of queries which seem to arise due to the double focus on a patients need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine.

  • 7.
    Gustavsson, Erik
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Sandman, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences. Högskolan i Borås, Institutionen för vårdvetenskap.
    Wiss, Johanna
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Rättviseteorier och prioriteringar2013In: Att välja rättvist: om prioriteringar i hälso- och sjukvården / [ed] Per Carlsson och Susanne Waldau, Lund: Studentlitteratur, 2013, 1, p. 49-64Chapter in book (Other academic)
    Abstract [sv]

    Hälso- och sjukvårdens resurser räcker inte till alla behov och önskemål från patienter och medborgare, vilket gör att personal och beslutsfattare hamnar i svåra situationer. Hur ska vi veta att det är rätt patienter som tvingas stå tillbaka? Att välja rättvist tar upp centrala begrepp och etiska principer kring prioriteringar. Boken beskriver även metoder för att göra prioriteringar på ett systematiskt sätt och erfarenheter av såväl nationella som internationella prioriteringar.

    Prioriteringsbeslut fattas på alla nivåer och kan gälla fördelning av resurser till olika verksamheter, behandlingsbeslut av enskilda patienter eller investeringar i nya medicinska metoder. Boken ger förslag på hur beslutsunderlagen kan förbättras. Här ges anvisningar om hur man mäter behov och nytta hos patientgrupper och i befolkningen, hur kostnadseffektivitet beräknas och hur man skapar ett kunskapsunderlag. På så sätt får läsaren inte bara ta del av prioriteringarnas teori utan även av deras praktik, inte minst genom konkreta exempel på hur öppna prioriteringar i dag tillämpas i svensk hälso- och sjukvård.

    Boken är avsedd för dig som arbetar kliniskt eller planerar att arbeta med prioriteringar – nationellt, i landsting eller i kommuner. Boken ger även en värdefull inblick för dig som vill lära mer om hur vårdens svåra val ska kunna hanteras i framtiden.

  • 8.
    Gustavsson, Erik
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences. Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Wiss, Johanna
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Multikriterieanalyser vid prioriteringar inom hälso- och sjukvården: kriterier och analysmetoder2013Report (Other academic)
    Abstract [en]

    The first part of this report draws attention to the vast amount of different criteria for policymakers to consider in priority setting decisions. There are several similarities between criteria that have been used in decision making in different countries and regions. However, it is interesting to highlight an important difference between the Swedish ethical platform and other countries and regions. The difference lies in the lexical ordering between the principles in the Swedish platform. This implies that one should take into account the principle of human dignity before the principle of need and solidarity and that the same relation should apply between the principle of need and solidarity and the principle of cost effectiveness. This strict hierarchy does not exist between principles in other countries. Similarities between different ethical platforms are especially found in relation to the principle of need or severity of the disease of which both play an important role in all countries and regions. Cost- effectiveness is another criterion that appears in all platforms that we have included in this report. Furthermore, it should be mentioned that the effect of an intervention plays an important role in all of the studies and reports that we have included. In several cases, there is a special focus on the prioritization of interventions with a proven efficacy. The above mentioned criteria are the most commonly present in reports on priority setting in health care but there are many other criteria which may be relevant to consider. It should also be noted that there are great similarities between the various reports on what should not constitute a basis for prioritization. For example, many countries and regions are reluctant to include chronological age as one criterion in their official reports.

    The second part of the report presents the methods of multi-criteria analysis; an umbrella term for various methods that uses a formalized process and ranks different alternatives on how they perform on a number of selected criteria. The different steps of a general multi-criteria analysis are presented: (1) identification of the object (2) construction of the model (3) evaluation of results and (4) the development of an action plan. A performance matrix, which is a standard tool for multi-criteria, is illustrated. In the next step, a selection of a number of various methods is presented, namely: direct analysis of the performance matrix, ordinal methods, the even swap-method, multi-attribute utility theory (MAUT), and the analytic hierarchy process (AHP). A number of applications of multi-criteria analysis have been performed in the area of health care decision making and the advantages and disadvantages of applying these methods in this area are highlighted.

  • 9.
    Sandman, Lars
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Broqvist, Mari
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Gustavsson, Erik
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Arvidsson, Eva
    Linköping University, Department of Medical and Health Sciences. Linköping University, Faculty of Health Sciences.
    Ekerstad, Niklas
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Carlsson, Per
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Vård som inte kan anstå: Tolkning i relation till den etiska plattformen och nationella modellen för öppna prioriteringar2014Report (Other academic)
    Abstract [en]

    Method

    The assignment from the National Board of Health and Welfare consists of three related parts. Part one presents different interpretations of the concept “care that cannot be deferred” based on an analysis of how the concept is used in the government bill and the wording of the Act. Several criteria are used to specify these interpretations. Part two analyses the interpretations of the concept “care that cannot be deferred” discussed in part one. The analysis is based on the ethics platform for priority setting. Part three aims to analyse how the concept “care that cannot be deferred” relates to the National Model for Transparent Prioritisation in Swedish Health Care and discuss whether it can be used to support prioritisation and rationing. The theoretical analysis is complemented by several examples of practical decision-making situations, as described by clinicians, that involve the care of non-registered individuals.

    Analysis

    In this report we have formulated several criteria that the concept “care that cannot be deferred” must fulfil according to the law (2012/13:407).

    These criteria address: Care need: The individual has a care need – i.e. a discrepancy exists between the desired and actual condition, which can be influenced by a care intervention.

    Limitations: The provider may place limitations on “care that cannot be deferred” delivered to non-registered individuals in Sweden and who are 18 years of age or older. Such limitations should be based on considerations involving:

    • Severity of the condition (current ill health, risk for future ill health, or special needs arising from previous assault and trauma).
    • Effect of the intervention if it is provided now compared to deferred intervention.
    • Cost-effectiveness of the intervention if it is provided now compared to deferred intervention.

    Limited responsibility: When applying the concept “care that cannot be deferred” the provider should assume that the individual is expected to be in Sweden for a limited time, but it is not necessary to consider the person’s opportunities to receive care once he/she is no longer in Sweden.

    Expanded responsibility: When applying the concept “care that cannot be deferred” the provider should assume that the individual is expected to be in Sweden a limited time, but should also consider the person’s opportunities to receive care once he/she is no longer in Sweden.

    Conclusions

    Based on the care need criterion, we conclude that non-registered individuals who seek care should be adequately evaluated in each case so the provider can determine whether a care need exists.

    We conclude that the limited responsibility criterion conflicts with the human dignity principle when it comes to limiting care based on chronological age and national registration. Further we conclude that the rationing of care implied by the limited responsibility criterion does not appear to be based on limited resources, but that the non-registered individual does not have the same right to health services as the nationally registered population does.

    We conclude that in choosing between the limited and the expanded responsibility criteria, the latter is preferable in light of the ethical platform since, to a greater extent, the expanded responsibility criterion allows consideration of relevant aspects (e.g. severity level, effect of intervention, and cost effectiveness) similar to the way the registered population is treated. Further, we conclude that the time limitation of the responsibility criteria is difficult to address since in many cases it is highly uncertain how long a person can remain in Sweden without necessary authorisation.

    We conclude that the factors presented for determining how to define “care that cannot be deferred” are basically the same as those in the national model for priority setting – i.e. severity of the condition (current and potential), effect of the intervention (and how it changes over time), and cost effectiveness. Concurrently we point to several contradictions in defining the definition, and in the law generally, that conflict with the ethical platform and the national model for priority setting. This includes the cases where specific diagnostic or treatment areas are explicitly noted, regardless of severity level, effect of intervention, or cost effectiveness.

    Further, we conclude that it is possible to point to several general combinations of severity level, effect of intervention, and cost effectiveness that can define “care that cannot be deferred” – so these combinations are very difficult to apply at the individual level. The reason is that it is difficult to determine individual risks and effects. As regards the registered population, a normal way to determine risks or effects would be either to provide treatment “for safety’s sake” or to wait, thus providing the opportunity for the patient to return if the  condition deteriorates or for the provider to call the patient for a return visit. If the provider decides that care can be deferred, usually there is an opportunity for a new evaluation at the initiative of the patient or provider. Since it is less certain that patients in the non-registered population can return for a new evaluation, it might seem reasonable to offer treatment more often for safety’s sake. Concurrently, this must be balanced against the risks associated with treatment and the opportunities to follow up on these risks wherever the individual resides.

  • 10.
    Sandman, Lars
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences. University of Borås, Sweden.
    Gustavsson, Erik
    Linköping University, Department of Culture and Communication, Arts and Humanities. Linköping University, Faculty of Arts and Sciences.
    Beyond the Black Box Approach to Ethics! Comment on "Expanded HTA: Enhancing Fairness and Legitimacy".2016In: International Journal of Health Policy and Management, ISSN 2322-5939, E-ISSN 2322-5939, Vol. 5, no 6, p. 393-394Article in journal (Refereed)
    Abstract [en]

    In the editorial published in this journal, Daniels and colleagues argue that his and Sabin's accountability for reasonableness (A4R) framework should be used to handle ethical issues in the health technology assessment (HTA)-process, especially concerning fairness. In contrast to this suggestion, it is argued that such an approach risks suffering from the irrrelevance or insufficiency they warn against. This is for a number of reasons: lack of comprehensiveness, lack of guidance for how to assess ethical issues within the "black box" of A4R as to issues covered, competence and legitimate arguments and finally seemingly accepting consensus as the final verdict on ethical issues. We argue that the HTA community is already in a position to move beyond this black box approach.

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