Category: Co-production

Prevention of falls – co-producing safety at home.

I read the BMJ every week, and tag the articles that might influence my practice. This time, the article that caught my eye was about falls:
https://www.bmj.com/content/364/bmj.l880. The summary – assessment by an occupational therapist, and making your home safer works well in patients at high risk of falling.

We’ve all been there, talking to patients about their rugs, the hazardous route round the bed with all the slippers in the way. Patients like the way they live, and just handing out advice doesn’t always make a difference.

This article has a great wee box on the co-production of safety at home, how to make very real improvements. The language is quite technical, so I have paraphrased this below. I’m so excited about it that I may well make a waiting room display on the subject.

  • If you are 65 or older and live at home, your risk of falls in the future is higher if you’ve had a fall in the last year, use a mobility aid, need help with basic activities, take medications that might make you sleepy, or if you are worried about falling
  • An assessment of where you live by an occupational therapist could reduce your risk of falls
  • The assessment involves a visit from the occupational therapist, who will recommend changes to tasks and your environment. These suggestions aim to reduce hazards and improve your independence and safety.
  • The occupational therapist may also suggests gadgets and technology to improve your safety at home, such as an emergency buzzer.
  • Occupational therapists typically ask you to identify what you think puts you at risk of falling, and you jointly problem-solve and agree on solutions.

I love that last sentence.

Complications: Atul Gawande

This weekend’s reading has included this book. In fact, I haven’t read anything else. The last two chapters in particular explore the relationship between doctors, their patients, between patient autonomy and taking clinical responsibility.

Atul Gawande is a surgeon and writer based in Boston, Massachusetts. He has written several very popular books about the praactice of medicine, as well as delivering four Reith lectures for the BBC in 2014.

This is his first book, published in the UK in 2002. There are fourteen essays, grouped into three sections. The first deals with fallibility and error, and the second looks at the mystery of medicine.

The final four essays discuss how we manage uncertainty in medicine, the interface between clinical evidence and human decisions. The penultimate essay is entitled ‘Whose body is it anyway’. In this essay, he discusses some of the core issues of realistic medicine, fourteen years before Catherine Calderwood coined the phrase. In truth, consent and patient autonomy are not new, but having a banner under which to explore these themes has been powerful.

He discusses the gap between what patients want and what they hope for. His writing is straightforward, and his arguments are illustrated by cases, the stories that hook clinicians into the debate. He describes how honest clinical discussions allow patients to understand what is happening, and take their share in the decisions.

In his own words: ‘Just as there is an art to being a doctor, there is an art to being a patient. You must choose wisely when to submit and when to assert yourself. Even when patients decide not to decide they should still question their physicians and insist on explanations… You do the best you can, taking the measure of your doctors and nurses and your own situation, trying to be neither too passive nor too pushy for your own good.’

‘Where many ethicists go wrong it is in promoting patient autonomy as a kind of ultimate value in medicines rather than recognising it as one value amongst others. Schneider (The Practice of Autonomy) found that what patients want most from doctors isn’t autonomy per se; it’s competence and kindness. Now kindness will often involve respecting patient autonomy, assuring that they have control over vital decisions. But it may also mean taking on burdensome decisions when patients don’t want to make them, or guiding patients when they do.’

‘Even when patients do want to make their own decisions there are times when the compassionate thing to do is to press hard: to steer them to accept an operation or treatment that they fear or forgo one that they pinned their hopes on. Many ethicists find this line of reasoning disturbing, and medicine will continue to struggle with how patients and doctors ought to make decisions. But, as the field grows ever more complex and technological the real task isn’t to banish paternalism; the real task is to preserve kindness.’

The eternal balance between clinical evidence, being clear about outcomes and chance, giving patients the chance to influence the chances that they have and the treatments that they receive.

 

 

WHEN PATIENTS INVENT TO HELP THEMSELVES

It has been a long time since I blogged, but not for lack of ideas, more a deluge of concepts and ideas, combined with the ever-present day job.

Today, I read an article in the BMJ, (click here to read it yourself) and it has lit a slow fuse. The article is about the ultimate patient engagement, where individuals with a condition create solutions that revolutionise care. 

Patients really understand what it is like to live with their condition, to come to terms with how it will affect their living and their dying. Patients who have been given the opportunity to understand what their condition is, and how it will progress, patients who have time to focus on their own solutions, these are the people who are coming up with the solutions that healthcare industry had never considered. 

This is the ultimate patient engagement, where patients have found what is on offer doesn’t meet their needs, where the risks are unacceptable, or the outcomes just not good enough. The inventions covered include a new type of surgical prosthesis for aortic root problems in Marfan’s disease, a smart ileostomy bag that tells you when it needs attention, an app to self-manage repeat prescriptions and medication compliance, another IT solution that uses CBT to improve sleep, an physiotheraby device for hand rehabilitation. 

The people behind these innovations are all persistent, have really understood the issues they are trying to solve, and have been steadfast in their pursuit of developing and sharing their ideas for the good of people like themselves. For several, they comment that it has been a long, frustrating process. Tal Goldsworthy, the inventor of the aortic root device, comments ‘If I had known it was going to be this hard, I really wouldn’t have bothered’ – but never the less, he has devised a safer alternative to aortic root replacement, and 200 patients have been fitted with his device. 

What these innovaters have found in their paths to success has been a willing clinical supporter. In general, one of the key hooks is being able to show that the innovation makes for better care without adding complexity. The message – ‘if you are a doctor who believes in the technology, then two words are key: be brave’. It is so much easier not to do something, but with courage you can help technology to really grow’.

Patients have their own lives to enhance, and that is a powerful motivator, but we need to be there as clinicians to make new ideas work.  

The five questions: what are they, and do they matter?

capture

In the most recent annual report from the Chief Medical Officer for Scotland, Dr Calderwood discusses the need to move towards a shared approach to clinical decision-making. Are we not already doing this? The evidence says not.

NHS surveys tell us that patients value highly the opportunities to discuss their care, the options open to them, and being involved in the decisions that shape their management. A survey undertaken by the Citizens’ Panel showed that while 92% of patients felt comfortable about asking their doctor about treatment, only 67% did so. Similar percentages were recorded for discussing risks and benefits. Why is there a gap? Patients report that the willingness of doctors, of how busy they appear to be, inhibit these discussions.

three talk

If we are to change our culture further (and it has already changed over the last fifty years) then we need to focus on how we enable these conversations. How often do we interrupt patients when they are talking? As well as restricting their narrative, it limits their expression of what is of concern. It emphasisis the agenda of the clinician and the pressures on their time. This needs to be more than tokenism, we need to really dig deep and learn better ways to do this. Having a good framework in which to conceptualise these conversations is important. One such structure is the three talk model. 

I also think that, as well as listening, and leaving space for debate and questions about management, we can coach patients to ask for better information. Some of this confidence comes from health literacy. Some comes from having the right words, the right questions to ask of clinicians as they leave our primary care consulting rooms and are passed on to secondary care colleagues, to other clinical teams.

This is where the five questions come in. The five questions were drafted by Choosing Wisely UK, which is part of global initiative to improve conversations between patients and their clinicians.  Five boards piloted the use of the five questions, encouraging people to ask clinicians about their management plans. Having the questions written down enables patients to take first steps in these discussions. The questions aren’t going to change the world, but they can empower patients to start these important conversations.

I have displayed these questions in practice leaflets, on the noticeboard in the waiting room, on lanyard cards, on signposting cards and on the practice website. I don’t know how well I would do with answering all of the questions all of the time. However, as well as providing concrete examples for patients, this produces an environment, a culture where patients are expected to discuss their care. This message is as powerful for my colleagiues as it is for patients.

A wise friend of mine, Dr Maria Duffy, commented that these questions appear very clinically orientated. They do not explicitly promote discussions around the social determinants of health. She works in Pollok and is a GP trainer as well as a GP partner. She is part of the Deep End group, practices who look after patients in more deprived areas, where there are higher proportions of patients whose social and economic background has a big influence on their health.

She would add:

  • Is going to the doctor the best way to address my problems?
  • What is there that I might change myself that would help?
  • How much do I expect to achieve by seeking a clinical solution?

While these questions do not focus on a shared approach to clinical decision-making, they encourage patients and clinicians to think outside the clinical box, to imagine other ways of tackling life’s problems.

However, it is not enough to parachute in to our surgery with the cards and the posters. The most important next step for me is to ensure that my colleagues understand the scope of what I am doing, that patients are engaged in the project, and that any practical top tips are spread to other clinical areas.

Letters to patients

As well as being a GP, I have been working in secondary care as a GP with a special interest in Dermatology. Around five years ago, I was feeling very annoyed with one of the practices that refers to the dermatology clinic. Patients were attending for review without having tried the treatment that I had suggested.

The dermatology clinic is usually rammed, and these appointments were adding unnecessary pressure on the clinic, wasting patients time, as well as adding a longer burden of ill-health due to skin disease. Nobody was happy.

I could have written to the practice and had a strop, but the practice involved was struggling to recruit partners or salaried GPs. They were relying on locum cover, and there didn’t seem to be an end in sight. In addition, other patients in other practices didn’t always seem to understand their treatment plans.

An aside here: most patients with chronic dermatological conditions have complex treatment regimens. This could include a pre-washing emollient, a soap substitute, a moisturiser, then a topical treatment, to be titrated up or down, and tapering to other treatments. Very few patients and GPs manage to get this all down at the first attempt.

I started writing my clinic letters direct to the patient with a copy to the GP, with consent. Nobody turned me down. The best responses were from relatives of patients with dementia, where a written care plan was useful for the team of carers. At the clinic, patients were advised to check with their practice for their prescription when they received their copy letter.

I didn’t do this as a proper improvement project, I didn’t measure follow-up outcomes, patient satisfaction, and I didn’t have a ‘spread’ plan. However, the feedback was immediate, and positive. GPs were in favour: they no longer have to contact patients to check up on new prescriptions. Patients were in favour, finding it helpful to have the treatment plan written down in the letter. Relatives were in favour, having a documented plan to follow. The secretary confirms that there is no additional work in doing the letters this way.

After 3 years of doing letters this way, I’m beginning to see other clinicians trying this out. Patients bring their letters to GP consultations, ready to discuss their treatment as more equal partners. I have been asked to advise other clinicians about how to structure their letters.

The biggest and best outcome is patients as equal participants in their treatment, and communication about their health. It is a culture shift, and it is gradual, and I am part of it.

Link workers and Realistic Medicine

My last post was a poem that really struck me. I’ve been wondering why, and I think it was because it articulates the need for help to be practical, to be real, and to have relevance and credibility for the person accessing that help. Just wanting to help, wanting to be useful, is not the full story.

What attributes would an effective link worker have? They’d have to be comfortable around people, good at connecting with professionals, community groups, officialdom and patients. They’d be able to gain trust, and then walk alongside people who may be disempowered in the face of the clinical professions, enabling communication. They’d need to be enquiring, able to find out and keep in contact with key people within organisations, to understand how to get the best from them. They would be able to understand the needs of each person that they support, and advocate for those needs to be met.

What evidence do we have that individuals need this kind of support?

% who can ask

We know there is a gap, data tells us that even though patients tell us they could raise questions in a consultation, in reality, this doesn’t always happen. For 10% of patients, they know they won’t ask if they don’t understand. For a further third, they think they could ask, but in reality they don’t. It is those with the least health literacy that need this support the most, otherwise realistic medicine is going to be beyond their grasp.

The new GP contract includes an aspiration for employing link workers so that every General Practice has access to a link worker, and that link worker can work with patients without need for a separate referral. It remains to be seen whether the people that need this support the most get the most access.

So, it seems to me that our link workers could be powerful allies for patients, decoding the language that is already building up around the concepts of Realistic Medicine, and keeping it basic, keeping it real, and keeping the patient at the heart of our consultations.

We don’t have a link worker identified in our area yet, but she or he will be on the project team.

Patients and quality in health care – co-production at scale.

If you type patients, quality and care into google, the results suggest that this is something that we do for and to patients. Discussions about change agents take me to pages about how to engage clinicians within the healthcare system, but nothing directly about patients as systematic change agents.

I want to flip this on it’s head, and inspire patients to shape the health service, seeking provision that meets what matters to them. A 180 degree revolution. Clearly, there needs to be some strategy, some oversight from health care providers, so that those with greatest need don’t lose out to those with the strongest lobby. Both parties are required to create the service.

The current term for this process is co-production. On a personal level, working as a GP, this is our bread-and-butter. An effective consultation supports the patient with diagnosis, providing information, management choices, and opportunities to meet again to discuss progress.

While I was looking for articles about patients as change agents, I came across the concept of the Patient Activation Measure, a tool to assess how ready patients were to engage in these discussions. The tool is used on an individual, case-by-case level, where the doctor-patient relationship and the problem to be managed is the scope of the co-production. How could we lift this to a more strategic level? Could we use the Patient Activation Measure to see how successful systemic change is in increasing the number of patients able to use the tools of realistic medicine, able to develop that agenda with the clinicians they meet?

As a GP partner in Scotland, I am responsible for ensuring that our practice systematically provides safe appropriate patient-centred care. We provide opportunities for patients to feed back to us about their experience of healthcare, and give us suggestions about improvements. These tend to be about small things – how comfortable our seating is, whether we should have Radio 2 or another station in the waiting area.

Nationally, Care Opinion collects patient feedback, enables organisations to respond and reply, as well as being searchable. But this doesn’t of itself, change the relationship between clinicians and the public. Much of the positive feedback includes stories about care where the principles of Realistic Medicine has been at the heart of care. Within this movement, I feel I am getting closer to system-wide patient-led quality improvement.

The place where I feel this project really sits is as part of the House of Care. I seem to be trying to create an environment in which the left-hand wall is nurtured. Imagine a house which has, at it’s centre, conversations about care, support, realistic medicine. The foundation and floor is the social context, all of the sources of support in a community. The roof, sheltering this all, is the system and processes that bring the patient and clinician together. The conversation has on one side, individuals ready to engage in a therapeutic dialogue, and on the other, clinicians who are committed to partnership working with patients.

House of care

So far, most of the Realistic Medicine discussions that I have been involved in have focused on the clinicians, the ‘right-hand wall’, and on the roof. However, we could possibly be talking only to each other, unless we have individuals and carers that are speaking the same language, individuals and carers who can start these conversations spontaneously.

This model allows for work at local, regional and national scale. The British Heart Foundation has just published a report on a three-year project that used the House of Care Model in five health communities. The report describes how patients were involved in championing this approach, how important an enabling infrastructure is, how to flex the model to fit local need, and the importance of culture before paperwork.

I’m feeling inspired.

References (accessed on 11/10/2018):

 

Hebridean glitches

Today I was going to meet up with Carmen Morrison from the Western Isles branch of the Scottish Health Council. She was also planning to get to Barra for a meeting, and because of the Autumnal Gales, the meeting didn’t happen – the Sound of Barra is not very nice in a storm.

Carmen was involved in drafting the SHC’s report on Realistic Medicine and has a lot of experience when it comes to involving the public. I shall have to pick a day when it is not stormy for our next planned meeting.

Who was Warner Slack?

Subtitle: Why communication technology matters.

I read last week’s BMJ obituaries, as I often do. (read the article HERE) The main tribute reflected on the work of Dr Warner Slack, who believed that ‘the patient is the largest and least utilised resource in healthcare’.

As I read further, I was astonished at the foresight of his vision. In the 1970s, with others, he set up the Center for Clinical Computing at Harvard, and created one of the earliest hospital information systems. He wrote much about clinicians and information technology, but the area I wish to focus on today is his vision of patient-clinician partnership, enabled by Information Technology.

Dr Slack trusted the agency of patients to use automation for their benefit decades ahead of his time. His underlying inspiration was that computing and information technology would empower clinicians and patients. He wrote about online patient communities, now a reality, with websites such as Patients like me and Smart Patients empowering patients to find out from others about the experience of their conditions, and the reality of treatment choices.

He also believed that patients should have access to their digital records, and now we have the OPEN NOTES movement.

I believe that patients need time to understand what we have told them, have the right to consider what we have recorded in their notes, and to consider the implications of their condition and the treatments that they are choosing between. This access, alongside health literacy, means that patients are on the therapeutic team for their own care.

I’ve had a look at the Primary Care Digital Services analysis of what we are working towards, and patient access to their clinical notes has been classified as High Input, Low Impact, meaning that it will be low down on the list of projects being progressed. I know that this is already part of the English GP contract, so it can be done.  This week’s mission: to find out whether this access is coming across Scotland, across the Western Isles, and on Benbecula.

Also, to link the blog to the practice website and the practice patient participation facebook page. (Done)

I’m inspired by Dr Slack, whose ideas are so relevant to Realising Realistic Medicine.