The recognition and valuing of patient knowledge:a way forwardijcs_913 613..616

Amanda Henderson1 and Peter Henderson2

1Metro South Health Service District, PAH, Woolloongabba, Queensland, Australia2Brisbane, Queensland, Australia

Keywords

Consumer involvement, patient information,doctor–patient interactions, patientknowledge.

Correspondence

Amanda Henderson, Metro South HealthService District, PAH, Woolloongabba 4102,Queensland, Australia.E-mail: amanda_henderson@health.qld.gov.au

doi: 10.1111/j.1470-6431.2010.00913.x

AbstractThe health care that patients receive, particularly in acute care settings, is mainly based inbiomedical knowledge. The scientific method of investigating health conditions hasdirectly contributed to the development of this knowledge. This has made a significantcontribution to increased survival rates, reduced recovery periods and extending the dura-tion of life.

The influence of consumerism on health-care management has led to an expectation ofincreased patient involvement when making decisions about their treatment options. Thisassumes that the provision of information helps improve patients’ understanding of thediagnosed health condition and assists them to make ‘good’ decisions. Accordingly, thereis a greater focus on providing information to patients.

The information provided to patients mostly involves explanation about the biomedicalaspects of their health condition. However, patients also desire information about how thehealth condition will affect their everyday life. We call the understanding of the implica-tions of this information ‘everyday knowledge’. Provision of this information can assistpatients by helping them realize their expectations and providing reassurance to bothpatients and their significant others.

Unfortunately, everyday knowledge that assists patients to understand and manage theirdaily life has not been as systematically researched or examined. While biomedical knowl-edge has been extensively developed and promoted through funding regimes, everydayknowledge has not benefited from the same support.

The interactions in health-care settings are influential in the generation and use ofknowledge. Practises that encourage sensitivity by health professionals to each patient’ssituation need to be identified and implemented. An increased focus on the inclusion ofeveryday knowledge alongside biomedical knowledge is likely to enhance the relevance ofthe information that patients currently receive.

IntroductionThe health care that patients receive, particularly in acute caresettings, is based in biomedical knowledge (Aronowitz, 1998).Biomedical knowledge arose from the extensive use of scientificinquiry in understanding the human body and how it is affected byillness (Winch et al., 2010). This largely objective and reductionistform of inquiry emerged through techniques involving intense‘dispassionate observation’, where information was collectedthrough autopsy and then categorized (Leder, 1984).

This knowledge has made a significant contribution to treatmentregimes based on contemporary evidence about the effectivenessof medications and procedures, and these have increased survivalrates and extended our lifespan (Aronowitz, 1998). These benefitshave resulted from a focus on objective data from observations to

inform treatment of patients as opposed to interest in the symp-toms that affect them (Aronowitz, 1998).

Increasingly in the Western world, the patient is viewed as aconsumer of health care. Patient needs should be at the centre ofhealth-care processes (Picker Institute, 2010). As a consumer, thepatient should be provided with information that will assist themto make decisions about the quality as well as quantity of their life(Gerteis et al., 1993).

What we propose is the enhancement of health-care practise toacknowledge the contribution of a personal ‘everyday knowledge’from the perspective of the patient that compliments existing,largely biomedical knowledge. These additional forms of infor-mation are important as they complement the overall informationbase for patients upon which they can make decisions relevantto their circumstances (Rycroft-Malone et al., 2004). There is

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potential to secure greater health benefits when informed consum-ers make choices that suit their needs (Entwistle et al., 1996).

Consumers and engagement in thedecision-making processThe provision of relevant and appropriate information to patientsduring hospitalization is fundamental to the promotion of patientautonomy, dignity and self-respect (Gerteis et al., 1993). Contem-porary health care in many Western countries strives to promotethese elements of human integrity through the establishment ofPatient Charters. These list patients’ rights when receiving healthcare, including the right to information (Australian Commissionon Safety and Quality in Health Care, 2008).

In the UK, Our Healthier Nation identifies the need for pro-active information, thereby establishing a political and linguisticimperative that patients are informed ‘consumers’ of health care(Rycroft-Malone et al., 2001). The motivation of patients to beactive in their decision-making is questionable (Waterworth andLuker, 1990; Shackley and Ryan, 1994); however, if patients are toparticipate in making decisions, then at the very minimum, theyneed to have evidence-based information that is relevant to theirneeds and presented in a readily understood format (Rycroft-Malone et al., 2001).

If decision-making is to be informed by a range of consider-ations about lifestyle, e.g. the possibility of remission, level ofdiscomfort and the impact of treatment on the patient and theextended family unit, then dialogue needs to be encouraged so thatthe patient (consumer) has the opportunity to discuss and explorethe relevance of the information to their needs. A successfuldialogue is dependant, first on the availability of the pertinentinformation that has grounding in some form of evidence(Rycroft-Malone et al., 2004), and second, that the context wherecare is delivered is receptive and amenable to the patient having avoice when decisions about their care are being made (McGrathet al., 2006).

Currently and mostly, biomedical knowledge is provided. Dis-cussions particularly within the acute care setting are generally notstructured to facilitate conversations that aid in the expression ofrelevant interests and knowledge pertinent to how patients conducttheir lives (Tang and Anderson, 1999; Paterson, 2001).

The impact of the organisation ofhospital care on staff–patientinteractions and accompanyinginformation exchangeThe organization of health delivery shapes interactions and thecontent of information exchange. The rituals around doctor–patient interactions have resulted in patients not having a voice(Roth, 1963; Strong, 1979). The doctor was able to command thiscontrol of the health delivery process through his responsibility todiagnose and plan a treatment regime (Waitzkin, 1991; Aronowitz,1998). The evidence of patients’ experience of interactions duringhospitalization indicates the knowledge of the doctor, and to acertain degree, other health professionals dominate the interac-tions (Waitzkin, 1991; Tang and Anderson, 1999; Paterson, 2001;Rycroft-Malone et al., 2001; McGrath et al., 2006).

While doctors regularly provide information and also askpatients questions, these interactions focus on biomedical knowl-

edge that are largely controlled by the doctor (Roter and Frankel,1992); patients are often reluctant to ask questions during amedical encounter, and it is not uncommon for patients to reportunmet information needs because they did not know the questionsto ask about situations such as pain management that they have notpreviously experienced (Henderson and Zernike, 2001). Often,there are minimal attempts to elicit subjective information fromthe patient about how the health condition is affecting them. If, bychance, such subjective information is sought, it receives littleconsideration.

Ultimately, the balance of power within doctors and many otherhealth professionals’ interactions continues to rest with the healthprofessional. Rather than the health professional attending to theknowledge and information requirements of the patient (Butleret al., 1992), the focus is on what the health professional knows.This style of communication severely limits the opportunity forpatients to have their knowledge considered in the managementof their health condition (Paterson, 2001). The focus by healthprofessionals on specific tasks such as deriving the diagnosis(Aronowitz, 1998), or teaching about medications (Rycroft-Malone et al., 2001), draws on objective information that does notvalue the patient’s knowledge. This situation has been describedby a patient in Lacroix et al. (1995), where a patient acknowledgedthat doctors know all about the disease, however felt that ‘we[patients] are those that experience the unwell condition, [and] wefeel we are not taken into consideration’.

Gaining recognition for additionalforms of knowledgeBiomedical information is propositional knowledge, i.e. knowl-edge that is formal, explicit and derived from research and schol-arship, accorded value and deemed to be reliable whencommunicating with patients (Rycroft-Malone et al., 2004). Thisfocus on objective biomedical information does not convey topatients how their health condition may affect their individuallifestyle. While doctors and the team of health professionals withwhom they work provide information about biomedical knowl-edge, i.e. treatment and procedural issues, this focus provides littleassistance to the patient when it comes to consideration of theimplications of how the health condition may alter the lifestyle ofthe patient (Weijts et al., 1993).

The limited availability of ‘useful’ information to patients can,in part, be attributable to the perceived importance of quantitativeresearch evidence derived from groups of patients (Rycroft-Malone et al., 2004), rather than exploring what research findingsmay mean to specific local situations or populations (Winch et al.,2005). Subjective knowledge, which is based on the experience ofcaring for particular patients (Benner and Wrubel, 1989), but hasnot yet been methodically tested, is attributed an inferior status.However, once non-propositional knowledge has been debated,contested and verified through the broader community, it can beaccorded greater worth because it becomes propositional (Rycroft-Malone et al., 2004).

As this subjective knowledge is largely experiential in nature, itis best created through dialogue and discussion between healthprofessionals and patients. It acknowledges the feelings and expe-riences that may be associated with the health condition. Theprocess includes the documentation by health professionals of

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significant concepts derived from their own observations and com-munication with patients about their everyday knowledge andexperiences. Patients’ knowledge can inform their decisions abouthow different options may impact on their day-to-day circum-stances both in the short and long term (Barry and Henderson,1996; Tang and Anderson, 1999). Its importance is starting to berecognized in preparing patients for engagement with the health-care system (Gray et al., 1997; Finn, 1999; Herxheimer et al.,2002).

Fostering the development ofadditional forms of knowledgeArticulating the experience of hospitalization is significant in gen-erating patient knowledge. It can be potentially empowering inrelation to support for patients and also patients reflecting andlearning about their health care. This can occur with the sharing,reflecting, comparing and contrasting of experiences that mayresult during situations where there is the opportunity for dialogue.Experiences that are important for patients are demonstrated bycamaraderie. Commencing as friendliness and characterized bywarmth in relationships, camaraderie can contribute to a richnessof data from patients’ collective discussions. Patient camaraderieis a largely hidden ‘untapped’ potential resource that, dependingon the circumstances of patients’ hospitalization, could contributeto knowledge generation.

Everyday knowledge eventually needs to be tested in a broadrange of circumstances to ascertain its relevance and suitability fordifferent patient groups. Motivated health professionals, consumeradvocate groups and self-help groups are arguably best positionedto further test and analyse this information. However, it isacknowledged that, as with all processes around research anddeveloping knowledge, participation needs to be informed andconsent given.

Recent developments in information technology have increasedthe accessibility of relevant information about health conditionsto patients (Diaz et al., 2002). Websites such as http://www.patienthealthinternational.com, http://www.nhsdirect.nhs.uk and http://www.abc.net.au/rn/healthreport are reasonableresources; however, it is important to consider the quality of infor-mation provided on some websites. They are a useful resourcewhen they suggest questions that patients could ask duringmedical encounters, e.g. http://www.pickerinstitute.org.

To realize the potential of the resources offered by these sites,there should be opportunities within the health-care system forpatients to extend their understanding through discussion withhealth professionals, patients and patient advocates with an appre-ciation of everyday knowledge. Currently, the nature of interac-tions in the hospital setting does not actively facilitate situationswhereby patients are given the opportunity to share meaningfulinformation with each other and other professional groups (Hend-erson, 2006).

Reconfiguring interactions withinpatients’ health experienceIf patients are to become better informed when making decisionsregarding the management of their health condition, then it is

important that multiple forms of knowledge are synthesized andmade available to them. Currently, there is little structure andprocess for utilizing everyday knowledge that arises from commu-nication and conversations between patients.

Health professionals’ local understanding of contexts and inter-actions with patients considered with the scientific method cangive rise to patient-centred knowledge (Rycroft-Malone et al.,2004). These forms of knowledge are accorded little importancealongside biomedical knowledge. If resources and expertise werechannelled by health leaders and managers into the developmentand application of additional knowledge, then it could betterinform decision-making. This could also promote recognition ofthese forms of knowledge (Henderson, 2006).

Within the health-care system, there are a number of settingsthat could be used to generate this knowledge from the relevantpatient population such as outpatient clinics, self-help groupsand specialist health practitioner support sessions. Furthermore,practises in acute health-care settings need to be modified sothat health professionals provide patients with comprehensiveinformation. This may also require changes to the mannerand place in which information is provided to patients, in par-ticular, situations that avail themselves of privacy, time andopportunity for discussion. To facilitate more active participationin the health-care system, patients need to be empowered todescribe and reflect on their experiences in order that they canmake decisions that best suit their circumstances (McGrath et al.,2006).

ConclusionThrough legislation and policy, patients are being actively encour-aged to become more involved in their health care. Those admittedto the acute care setting with little prior knowledge of healthregimes and treatments are predominantly informed about theircondition by health professionals using biomedical knowledge.They are afforded few opportunities to develop additional forms ofknowledge and therefore to gain a better understanding about theirhealth condition. Current health-care practise does not encouragean understanding as to how proposed treatments may affect theireveryday activities. If additional forms of knowledge are recog-nized as propositional knowledge, and made available throughdialogue and discussion between patients and health professionals,then patients could be better informed.

Within the acute setting, there are often opportunities forhealth professionals to assist in the production of patient-centredknowledge through the synthesis of scientific knowledge,everyday knowledge and patient circumstances. It is acknowl-edged that health conditions affect patients differently; therefore,more formal opportunities for patients to share information andreflect about their health within health-care settings to derive abroad understanding of their health condition can assist theachievement of health-care outcomes that better meet patient’sneeds. The addition of everyday knowledge to the com-munication process between patients and health professionalswould contribute to more realistic patient participation in con-versations about their health care and a more informed decision-making process. This could result in health-care outcomes thatare more patient-focused and could lead to increased patientsatisfaction.

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