Professor Paul Bissell BA MA PhD ScHARR University of Sheffield

Professor Paul Bissell BA MA PhD ScHARR University of Sheffield

Overview of talk History of medicines use research, emergence of specific paradigms - compliance, adherence, concordance, resistance. Understand the voice(s) of the medicines user (lifeworld) as s/he grapples with illness & system priorities (prescriber / health system). Theme - uneasy tension between system & life-world, characterises field of medicines usage research. Theme - intersection / clash of medicines use research with changing discourses around the management of health from docile patient to reflexive consumer.

Why are medicines interesting? Pellegrino (1976) Few human experiences are so universal and have such symbolic overtones as the ordinary acts of prescribing and ingesting of medicines. Their meaning far transcends the pharmacological properties of the substances ingested. This symbolism is amongst the most ancient and deeply placed in human nature. Van der Geest & Whyte (1989) compared to surgery, which is literally in the surgeons gift, medicines are democratic anyone who can gain access to them has access to this power.

Three paradigms of research Contemporary discourses around medicines usage & health are complex and contradictory. Focuses on 3 paradigms of medicines usage research: Compliance / adherence Concordance Medicines resistance Much overlap between paradigms

Compliance as a paradigm Notion of non-compliant patient emerged in medical texts @ 1930s. Refers to the extent to which patients do not follow the instructions given. Non-compliance represents a way of taking control resisting bio-medical model.

The search to understand non-compliance At least one-third of all prescribed medicines are not taken as directed. (Source: Horne 2001). Often a continuum between the compliant and the noncompliant patient (we are all non-compliant some of the time). Numerous factors associated with non-compliance severity of disease; acute or chronic illness; complexity of regimen; perceived benefits of treatment; impact of regimen on daily life; status of disease / degree of stigma associated with it; costs of treatment; education; social class of patients But no definitive & clear pattern emerges from 10,000+ research papers No such thing as a typical non-compliant patient

Critiques of compliance adherence Throstle (1988) compliance is an ideological concept - about physician control in an era of declining professional status & power. Stimson (1974) compliance paradigm required patients to be passive, obedient and unquestioning. Rooted in Parsons sick role model. Horne (1993) patients beliefs about medicines play a strong predictive role in treatment adherence across a range of diagnostic areas...thus need to understand beliefs in order to understand non-compliance. The needs of the system (prescriber) may clash with the interests of the life-world (patients may not privilege health / treatment regimen, compliance in the same way as health professionals)

Critiques of compliance adhernence Emergence of idea of adherence Emergency of idea of lay expert Compliance / adherence stands in opposition to modern notion of consumerism, of an educated, active, reflexive, challenging user of health services.

Relationships between prescriber & patient Quality of relationship / communication between prescriber & patient becomes focus of interest in medicines use research. Consultation seen as a space for sharing of knowledge about medicines, consultation as therapeutic in itself (eg Balint groups, 1950s). Critiques of prescribing, Stimson (1974), showed how patients often felt fobbed off when offered a prescription. Britten (1997/ 2001) in around 1/5 of cases the prescription was not warranted on clinical grounds; act of prescribing used as a way of ending difficult consultations. Doctors perception of the patients desire for a prescription was strongest determinant of decision to prescribe. Outcome - misunderstandings between prescriber and patient routinely arise because of differences in power, different priorities, unwillingness to share.

Misunderstandings in the consultation (from Britten et al 2001) The Patient Mr C is a 31 year old married man. He has suspected fibromyalgia syndrome, which causes pain in his joints. He takes a range of drugs including painkillers and amitriptyline. He is consulting to discuss his painkillers among other things.

Misunderstandings in the consultation The doctor - Dr D is a male partner in a five partner rural practice. Summary of misunderstanding Mr C has an appointment to see a rheumatologist in a few weeks' time. He intends to stop taking all his drugs a few days before seeing the consultant, but does not tell Dr D. Mr C is worried about taking too many painkillers. Dr D is unaware of this and thinks that he likes taking medicines.

Misunderstandings in the consultation Preconsultation interview with patient Interviewer: Right, okay. And do you think you will change any of your medication or ask to change it or...? Patient: Mmm, not at the moment, he won't change it `cause erm he don't want to up them up too much or I might get used to them and I might feel more pains and that. I'm trying to keep the painkillers down. I'd rather go with the pain a bit than be bumped... too much pain and then get addicted to painkillers what's going to... Once the painkillers, you're equal to the painkillers your pains are going to be there all the time anyway. So, he's trying to keep the painkillers under control

Misunderstandings in the consultation Post-consultation interview with patient Patient: So what I'll do is,i wanna come off the painkillers for about, I've gotta see him on the 21st, so I'll probably come off them for about four, three or four, days so I can get my pains in my joints, so when I go to the s- see the er arthritis specialist then he could s- suss out what my joints are like Interviewer: Right, yeah. Mmm Patient: It's if er without the painkillers if I've got too many painkillers he can't assess what's in my what my pains are like Interviewer: Mmm. Did the doctor tell you to do that or were you just doing it yourself? Patient: No, I'll do it.i'm gonna do it myself

Misunderstandings in the consultation Postconsultation interview with doctor Doctor: I think he loves taking medicines actually. For a young man, 10 years younger than me, he's had more medicines than I've had hot dinners. So I can only suppose that he likes having them. Something which proves he's ill.

Why do misunderstandings occur? Poor communication. Beliefs / practices around medicines & treatment. Different priorities. Fear of disrupting doctor patient relationship. Access to greater volume of data on disease / treatment through internet / other channels. Rise of demanding or informed user of health care services? Emergence of concordance Shares similarities with SCDM.

Definition of concordance Concordance is based on the notion that the work of the prescriber and patient in the consultation is a negotiation between equals and the aim is therefore a therapeutic alliance between them. Its strength lies in a new assumption of respect for the patient s agenda. (Concordance Working Group 1997:8) Sharing of beliefs / practices / knowledge around medicines use. Working towards agreement, respecting patient s agenda. But patients may not want any of this

Limitations of concordance Time, resource, structural constraints. Prescribers may wish to distance themselves from the emotional baggage patients bring when sharing beliefs in the consultation. Little research evidence for concordance or a concordant model being used in practice (Pollock 2005). Bissell et al (2004) - concordance model may undermine trust and faith in medical power. Treatment regimens usually involves multiple dimensions (medicines AND lifestyle), is pervasive and long terms is difficult to accomplish sharing beliefs will not change that.

Concordance Bissell et al (2004) Type 2 diabetic patients views about the consultation I ve seen it happen. They ll be waiting to ask questions about their medicines or what have you and then not feel like they can when they get in there. I ve felt like that myself, haven t you? Its like you don t think you can ask any questions when you get in the room with the doctor. What you have got to remember is that the doctor has a lot of authority. To Asians, the doctor is a person with high status and its difficult for them to ask questions.

From concordance to medicines resistance Meta-synthesis of findings from key qualitative studies of medicines taking. Pound et al (2005) we conclude that the main reason why people do not take their medicines as prescribed is not because of failings in patients, doctors or systems, but because of concerns about medicines themselves. On the whole, the findings point to considerable reluctance to take medicines and a preference to take as little as possible. We argue that peoples resistance to medicines taking needs to be recognised and that the focus should be on ways of making medicines safe, as well as identifying and evaluating the treatments that people often choose in preference to medicines.

Some reflections What do we know patients do not comply some of the time compliance is hard patients resist medicines do not routinely share information / beliefs in the consultation. New models of the consultation seem unlikely to transform patterns of behaviour in the consultation, and thus will not impact on medicines taking practices eg. Pilnick & Dingwall (2011) point to the continuing dominance of Parsonian sick role model in doctor/ patient encounters. Britten (2008) points to the colonization of the life-world by the system, scope for internet and patients groups to redress balance, make medicines safer, more acceptable. Post Francis Inquiry in UK - the patient and her needs must be at the centre of health care practice (not those of the system)

Final reflections But optimizing benefits from expensive medicines has to remain a key system imperative. Medicines are expensive to develop and to prescribe Back to compliance? Austerity the minimalist state?