Category Archives: Patients

Participatory medicine

Patient led campaign for better involvement of patients in their own care.

Manifesto has 5 principles:

  • Share and listen – acknowledge patients are experts in their own lives and bodies, use plain language.
  • Respect one another
  • Share information responsibly – help patients access the information they need, and respect confidentiality
  • Promote curiosity – be clear even when it is difficult to explain, encourage patients to do their own research and get involved in patient communities
  • Be a teambuilder – treat patients as collaborators, respect their goals, values and preferences

These are shared responsibilities, the patient has their own duty to be honest, ask questions, advocate themselves.

Institute of Medicine describes a continuously learning system (in respect of healthcare in the US), the second feature of which is Patient-clinician partnerships. This is explained as “engaged, empowered patients – a health care system anchored on patient needs and perspectives, and promoting the inclusion of patients, families and other care givers as vital members of the team“.

Unclear this happens on any significant level, especially when it comes to communication outside the hospital or clinic room. Studies have found that when patient portals or messaging systems are used, patients often respond with further questions or comments, which suggests unmet need and desire to engage further. Other studies have found that only a tiny minority of messages in such systems are initiated by the health care team, which suggests a reactive rather than active contribution to the partnership.

Expert patients

Idea came from Prof Kate Lorig, rheumatologist in US. Trained lay educators had better outcomes than conventional clinic appointments. In 2001, became an NHS programme, aimed at cutting costs of chronic disease.

Technology has aided this massively – see “E-patients“. But of course variations in access to technology and tech literacy.

Patient centred networks not well understood. Can have links to health professionals, but can also be tied to industry/commercial interests, may even be driven by industry.  Online resources scored higher with e-patients for convenience, emotional support, empathy, death and dying, in depth medical information, practical help.  Specialist physicians rated highest for diagnosis, technical knowledge (just), managing condition after diagnosis.  So online resources score highest where medics poorest and vice versa.  So combination of both ideal!  Also, medics come and go.  Some patient groups have published their own research eg GIST group.

But behaviour change, specifically when talking about self-efficacy, is very individual and psychology focussed. Less exploration of social influences, other than focus on peer modelling.

Foucault, of course, was fascinated by how people can become obedient, self governing, and how this is produced by the efforts of “pastoral power”, in a similar way to the Christian church and the process of confession.

Trisha Greenhalgh would say that although collaboration between patient and doctor is important, it’s still just one aspect of a whole system that includes community, material conditions, law/policy, social deprivation, cultural norms etc.

Doctor-patient communication

Consultations – patient’s opening chat is interrupted by their doctor after mean 18 secs.  Patient talk for 40% of total consultation time, estimated by doctor at 60%.

Wayne et al 2011 – less info given to poorer and minorities, more dialogue and more informative with better educated, more literate patients

Neumann 2011 – decline in medical empathy: significant through medical school,  further declines through residency.  “Hidden” curriculum? Hardening/cynicism?

Rosenthal 2011 – humanism and professionalism student module, no decline in 3rd year student empathy.

Chen 2012 empathy associated with women, non-technological specialty preference, high debt!

Roter and Hall 2006 – doctors like to retain authority but poor at managing confrontation eg eye contact, picking up emotional cues of distress

Psychodynamic approach – counter transference (disgust, judgemental), counter resistance (non-compliance)

Narrative as diagnosis!  William Osler – the diagnosis is in the story.

Communication and teamwork “skills” underestimates complexity, the affective component.  Only learned if valued, rather than as something to be acquired

Heroic individualism valued in medicine, cf dialogue

Students struggle to make conversation with patients!  Fear of intrusiveness, failure to connect medical issues with psychosocial elements.

Best – learn through active reflection on work based learning (cf how artificial PBL etc are).  Think about values, how they shape communication.  Modelling of democratic values.  Appreciation of complexity of communication.

[ Alan Bleakley, Peninsula medical school – Homer as evidence of honour/shame/face directed behaviours, cf feminine, guilt directed behaviours etc]

“We teach good communication skills because we accept not everyone has them. But we also need to teach professionalism… We’re happier to challenge poor clinical skills, or to point out a gap in knowledge, than to have a conversation about behaviour or attitudes.”

“We expect learners to improve and progress.  So, by implication, they’re not perfect professionals: they can make mistakes.  It gives people permission to say, “That doesn’t look professional”.”

“We need to work on accepting  constructive feedback for unprofessional behaviours… We want a positive culture, where we teach people to speak up to promote professionalism.”

[Sheona MacLeod, BMJ 2020;368:m768]

Participatory Medicine

Outside of the consultation, doctor-patient communication becomes a mixture of formal and informal, but both tend to be one sided. Formal letters are an essentially one sided message from the doctor to the patient. Informal communication includes requests or questions from the patient to the doctor but again, often one sided as it does not usually lead to a meaningful exchange.

See Participatory medicine.

Difficult conversations

From “Everything happens for a reason – and other lies I’ve loved” by Kate Bowler:

Appendix 1 – absolutely never say this [my comments added]

  • Well, at least… [minimizing]
  • In my long life, I’ve learned… [good for you, have a medal]
  • It’s going to get better, I promise. [fantasy]
  • God needed an angel [only if you watch Ghost, and you think God is sadistic]
  • Everything happens for a reason. [let’s see if you appreciate my theories when you are drowning]
  • I’ve done some research [have you heard about… Forget what the professionals say, there’s bound to be a secret cure out there]
  • When my aunt had cancer [living it, thanks, would rather not have to relive someone else’s – particularly if this my opportunity to NOT think about it]
  • So how are the treatments going? [not nice to have to summarise it and regurgitate it constantly, please check first if I want to talk about it today, sometimes I do, sometimes I don’t]

Appendix 2 – give this a go

  • I’d love to bring you a meal this week [bring me anything, I don’t really know what I need, what are you good at?]
  • You are a beautiful person [nice to know you are doing a good job – without this being some sort of lesson.  And don’t make it sound like a eulogy]
  • I’m so grateful to hear about how you’re doing, and just know that I’m on your team [nice to not have to give you an update, great that you’re informed and concerned, let’s talk about something else]
  • Can I give you a hug?
  • Oh, my friend, that sounds so hard [sometimes it feels like no one wants to hear about how awful it is – simmer down, let them talk]
  • (silence) [the truth is no one knows what to say – pain, tragedy are awkward.  So show up and shut up)

Sometimes our role is just to sit in the rubble with families (Judith Murray).

See Spiritual Care.

Family centred ward rounds

A study highlighted that the attending physicians talk outside the room as much as or more than they do inside the room.

“It is frustrating to hear the team speaking about you in the hallway before they come in and wondering what they are saying. Then, after they leave the room, they continue to have discussions in the hallway, where we can hear pieces and parts but not all of the discussion.

“We would prefer that all discussion happen in the room with the nurses and the family present.”

The nurses are the ones who have spent the most time with the family, and they have a lot of information to offer. However, the study highlighted that the nurse does not have much of an opportunity to speak during the rounds.

Sometimes, the entire rounds process is effectively over by the time the medical team comes into the room, and rounds are more of a procedural event than a discussion.

Other comments from one family:

  • It would be nice if all physicians involved in the care could participate in the family-centered rounds experience, even if some need to be on the phone. Many times, the rounding process happens but then we are left with a statement that they will wait until the other doctors come by to make a decision. This not only prolongs the decisions but also splinters the care that the concept of family-centered rounds is trying to improve.
  • We appreciate when the medical teams sit down in the room with us. It makes us feel as if we are having a discussion where everyone is invited to participate instead of a group of people standing over us. This style of communication seems to engage the patient and family in honest, open conversation, and it seems to cause the team to slow down enough to listen to our story.
  • It would be nice to have some idea of when they are coming to the room because it seems that no matter what we do, the team comes in when one of us has run to the cafeteria to get breakfast or to take a phone call in the lobby.

[Sarah Pickel, Mark W. Shen, Collin Hovinga.  Hospital Pediatrics  Jul 2016,  6  (7)  387-393;  DOI: 10.1542/hpeds.2015-0136]

Webcam clinics

Webcam clinics for diabetes (Newham, all ages) – mean duration only 9 minutes for both consultants and nurses, cf 25/30 minutes for face to face!  DNA rate 13% cf 28% for face to face.

Patients felt HCPs more focussed on them, other studies have confirmed that eye contact is better! But feels more impersonal, so prior relationship is important.

Health anxiety

DSM-5 has “illness anxiety disorder”, defined as preoccupation with the idea that you’re seriously ill, based on normal body sensations (such as a noisy stomach) or minor symptoms (such as a minor rash), to the degree that it gets in the way of normal life. Other features are persistence of such ideas over 6 months, finding little or no reassurance from negative test results or a doctor’s reassurance, repeatedly checking body, avoiding people, places or activities for fear of health risks.

In other words, hypochondriasis. Which gets its name from the idea that such feelings came from liver/spleen/gall bladder (“melancholy” – black bile).  William Cullen, in Edinburgh in the 1790s, appeared to take a particular interest in this.

For the sake of diagnosis, this disorder requires the absence of symptoms, which excludes the large group of people who have similar preoccupation and fears about non-specific or unexplained signs and symptoms.

Health anxiety is therefore a broader concept, and can include anyone who is more desperate for relief from worry, than for relief from actual symptoms.

Cyberchondria = combination of increased pathologisation of society, and ability to browse the internet.  Because provides the opportunity to find very serious, extremely unlikely explanation for problems.

Diagnosis of health anxiety is well accepted by patients if explained respectfully!

[BMJ 2016;353:i2250]

Individual responsibility for health

Deciding how to distribute health care costs may include looking backwards at what behaviours have contributed to a condition (eg tattoo removal may not be publicly funded, but removal of a disfiguring skin lesion where suffering is equivalent is), or may look forward to how behaviour might affect the effectiveness of a treatment (eg liver transplant with continued alcohol excess).  Sometimes looking forward and looking backwards have the same outcome, but not necessarily.

There are a number of arguments against these attitudes:

  • Humanitarian – a patient’s suffering should be addressed, regardless of the circumstances
  • Libertarian – denying treatment is likely to lead to even worse consequences, with eventual loss of political and civic participation (which is a societal good, as per JS Mill)
  • Fairness – although certain behaviour may increase the risk of a negative health outcome, other factors also play a role which are outside individual control, and rarely straightforward to establish causality.
  • Practical – if a doctor makes decisions based on behaviour, it encourages intrusiveness on their part, and defensiveness on the patient’s part, both impact on doctor-patient relationship
  • Moralistic – who decides which behaviours are acceptable and which not? Rarely non-judgmental

The liberal egalitarian response is to hold individuals responsible for their choice, but not for the consequences of their choice.  The egalitarian view is that everyone should have equal opportunities, regardles of their natural or social advantages/disadvantages at birth.  Of course, it can often be debated whether “choice” is ever truly distinct and independent of circumstance!  The liberal view is that there should be no formal or informal barriers (although not necessarily compensation for the disadvantaged).

So it would be appropriate to tax smokers an amount related to the increased health costs of smoking.  It would not be fair to tax some smokers more than others, even if the costs of their treatment might be more – it is the choice that matters.  This avoids all the objections above, apart from the moralistic one: but at least decisions on lifestyle taxes are made democratically, not by health care providers.

Does not solve the problem of whether behaviours can truly be considered a choice, when they are often predictable based on socio-economic factors.  Plus, not all types of behaviour can be taxed – physical inactivity?  Poor health care seeking behaviour?  Unsafe sex?

Cappelen and Norheim, J Med Ethics 2005;31:476–480. doi: 10.1136/jme.2004.010421

Significant Event Analysis

Traditional M&M (mortality and morbidity) meetings – Many errors are not reviewed, and the key protagonists often not present when a case is being discussed; fail to engage affected families. This lack of transparency in the context of the Francis report is at odds with our duty of candour to patients when things go wrong.

Much energy is spent in the NHS concluding whether errors, adverse incidents and deaths are ‘avoidable’ or ‘preventable’.

‘Avoidability’ is an arbitrary conclusion – what matters, surely, is the care that the child received. Professional analysis of the care given reassures parents that their child’s life is of primary importance, and may provide some comfort that their experience will benefit other children.

Root cause analysis (RCA) tracks the origins of an adverse event back to find causes – too simplistic?

cf ‘Safety-II’ approach – focuses on understanding how things usually go right, and only then exploring why things occasionally go wrong.  Rare serious events, although easy to identify, often have complex aetiology, and factors may be difficult to modify. In contrast, “normal” behaviour may be easier to understand and to influence.

Parents’ own questions should inform professional discussion.  Analysis should go beyond identifying what the child died from, to considering why a child died of that condition, in that place,  at that time.

“The investigation of medical error, adverse events and child mortality each requires a distinct approach that revolves around a continuous cycle of reporting, professional scrutiny and follow-through of SMART actions. These processes should separately feed into a properly formatted clinical governance meeting, the purpose of which is to provide assurance to hospital boards and other regulatory bodies that there exists coordinated oversight of risk management, clinical effectiveness, audit and patient experience.”

[James Fraser, Bristol – Arch Dis Child doi:10.1136/archdischild-2015-309536 ]


Online survey of 400 people aged 50-70, only 2.6% of people could explain what overdiagnosis means.

Definition: when a disease is detected that would not cause any harm during the lifetime of the patient.

Without better public understanding, difficult for them to make informed decisions about their health.

Ghanouni et al. A survey of public definitions of the term ‘overdiagnosis’ in the United Kingdom. BMJ Open 7 April 2016.