Who owns the conversation? #10minsGPguide

Last night I noticed a tweet from @StuartBerry1. It had been retweeted by @amcunningham – if you are in any way interested in health or medicine, and you’re not already following Anne Marie on twitter then stop now and go follow her (if you’re not already on twitter then you’re really missing out).

Anyhow, Stuart was collating ideas for hints and tips of how to get the most out of a 10 minute GP consult. It’s years since I’ve seen a GP but I have attended numerous doctor or hospital appointments with my parents since my Dad was diagnosed with cholangiocarcinoma (bile duct cancer) five years ago. This blog is full of my version/experience of my Dad’s illness, it’s not his experience or views, just mine so it’s already once removed, and it is obviously heavily influenced by who I am, my world view and my experience. That said, I contributed a few ideas to the GP conversation and there has been a healthy amount of discussion about one of my ideas since.

I shared that on two occasions I’ve used my phone to record conversations with Dad’s medics. I thought twice about whether to share that information, and felt it was a little risky to do so, because I knew some people wouldn’t necessarily agree with my course of action, or approve of it. If I’m honest I’m not exactly confident of my own actions because on one occasion I didn’t seek permission to record it.

The first occasion was in A&E (a couple years ago now) and I asked the doctor if they minded me recording what they were saying so I could have it as a record and to share with family members. They had no problem whatsoever, seemed almost indifferent. I just recorded what they told us, listened to it a couple times after and I no longer have it as I’ve changed my phone since then.

More recently I recorded one of my Dad’s oncology consults. On this occasion I didn’t ask permission, the appointment was already 90 minutes late, I didn’t think of it, and it was only once the consultant started explaining something complex and I could see my Mum struggling to take notes, that I thought I’d just record it on my phone again. I can’t tell you how many times my Mum, Dad and I have all sat through the same conversation, with the same person, at the same time and yet come away with different understandings or memories of what was said.

Certainly my experience of Dad’s current situation is that it is extremely complex, and extremely complicated. It doesn’t really fit with my mental stereotyped image of clinical science. In fact i’d go as far as to say it doesn’t feel like science, and thats no bad thing, its much more human than that. My Dad has (with a few minor exceptions) received outstanding care over the past five years, he has defied all odds, and its not much short of a miracle that he is still here. None of that would have been possible without the phenomenal skill, compassion and knowledge of the many medical professionals he has come into contact with. At this stage though, as Dad is receiving palliative treatment (blood transfusions to counteract bleeding tumour, chemo, scores of drugs) it seems that it is more art than science. Everyone who comes into contact with Dad seems to have a different interpretation of what the best course of action is, or they don’t know – sometimes that honesty is refreshing, sometimes it’s just plain scary.

What I have learnt over the past five years is that there is probably no such thing as a textbook case, certainly if there is my Dad isn’t it. Consequently so much of Dad’s care is very personalised and tailored, things change quickly, we’re aware he is in a very precarious situation. I consider the best thing I can do is support him and Mum, and my siblings who live away, so we are all as aware as possible (or as aware as we want to be) about what the current status quo is, for as long as that lasts. To that end I don’t regret recording his consultation, even though I feel a residual guilt that I didn’t ask for explicit permission (it upsets the ethical researcher that runs through my core), it felt like the best course of action at that time.

I’ve listened to the recording twice since, with my Mum. No-one else has heard it, it’s something that is quite precious to me. On the one hand it serves as a factual record for when we start doubting ourselves and on another it is a recording of my Dad discussing critically important decisions with the man who has in my opinion (along with his surgeon/previous consultant) done the most to sustain his life. I can’t imagine anyone outside my own family ever hearing that recording, unless I figure out how to save it elsewhere I could lose it at any time, but I like the idea at the moment that one day my 2yr old niece may be interested in knowing more about her Grandad and she could hear for herself how brave he was, how he faced what I would have considered impossible conversations a few years ago, head on. It’s evidence of his spirit, and my fantastically brave and spirited Mum’s attempts to do the absolute best for him.

I appreciate the ethics are dubious, but I’m glad I did record it. I also think there could be a really useful application of this simple technology in everyday consultations. Lots of patients have smart phones that enable recording nowadays, I’d like to think that there is a GP out there who would embrace the idea – how about actively encouraging recording, even if it wasn’t a verbatim record that people wanted, I think most doctors surgeries could help people to get more out of their allocated slot if they encouraged people to think of the questions they wanted to ask before seeing the doctor.

Some of the obvious concerns are around litigation, but really, really in our enlightened world of empowered patients is this an acceptable argument? OK, so I’m playing devils advocate but really look at how much information is collected from the patient by the doctor in an average consultation. No patient I know of has ever been asked if they mind if the doctor takes notes. How about taking a leap of faith and embracing the opportunity of supporting patients and their families. Who wouldn’t want to?

ServDes: value, trust, transparency, ethics and shared expertise

A couple weeks ago I had the absolute pleasure of attending ServDes, the Nordic Conference on Service Design and Service Innovation. Held in beautiful Linköping in the middle of the South of Sweden (Swede’s seem intensely proud of which bit of Sweden they’re from so I thought I better clarify that), the research conference was focused on ExChanging Knowledge. Acknowledging that most publications in the field of Service Design have focused on establishing the discipline, the call for papers for ServDes was an explicit invitation to those in research and practice who wished to contribute to developing the service design knowledge base to:

“…openly discuss challenges of the field. Changing Knowledge is about investigating the fundamentals in service design and challenging the knowledge inherited from the disciplines which service design has grown out of. Exchanging Knowledge refers both to integrating knowledge from other fields and the ongoing conversation between conference participants with their various roles; consultants, students, in-house, clients and academics”

The full conference programme, linked to all the papers presented, is available on the conference website. Better still you can view videos of all the presentations on the conference Vimeo site. The conference kicked off with an unconference day; myself and Fergus Bisset hosted a room exploring Evidence Informed Practice in the Design of Services. You can read our session outline here and we’ll report the day in another blog post shortly. I really enjoyed the day, we met some fantastic people with a range of views and we had some great input from people on twitter who weren’t able to be at the conference….but more on that later.

For now I wanted to just offer a few of my highlights, thoughts and reflections. I’m sure these will develop over time and more blogs will follow but this post in itself is way overdue now so I wanted to put this out there as a starting point. I have chosen to just offer random thoughts, grouped where possible, but not linked to the conference programme in any structured way – partly because I prefer chaos, partly because I’d like (at some stage) to comment on some of the papers in more detail and partly because it all merged into one amorphous collection of thoughts in no small part influenced by the pre-servdes chats and the learning and conversations outside the conference proper. When looking through my notepad of scribbles and drawings from ServDes I found a napkin on which I’d scribbled a bullet pointed list of the key terms and phrases that seemed to emerge throughout the conference – the top four for me were value, trust, transparency and shared expertise. As good a place as any to start methinks.

Value – what a biggy. Value came up again and again, with reference to the value of service design as a discipline and of design more generally. Katarina Wetter Edman reported her (PhD??) study on value in design, you can read her paper here. She referenced Graeber’s four (anthropological) perspectives on value: the concept of doing good, value in a monetary sense, value as meaning and meaningful difference and value as action. WetterEdman’s research found that designers don’t talk about value, not as an explicit concept, the v word was rarely mentioned with a preference given to talking about emotions, contextual understanding and helping others. Within that, designers tended to focus on value in use and/or economic benefits – the real challenge of this perspective of course is that value is a value-laden and individualistic perspective (apologies for stating the bleeding obvious) and therefore how designers understand and share ‘value’ is key to success.

Value is without doubt key to judging what the outcomes of good service design are. It struck me time and again at ServDes when I asked people why they were interested in designing services or what service design is (I’ll come back to that in a later blog post), that almost everyone made reference at some point in their answer to wishing to do good or to the fact that they wanted to make a difference. I admire, respect and whole heartedly support anyone’s intention to do good or make this world a better place – however as genuine as I am in that sentiment, I am also incredibly wary of the damage that good intention’s can do when left without recourse or measure! This may all sound terribly worthy (and at some level you’d be correct to view it as such) but in few other professions would young graduates be given free reign and direct contact with people relying on services without any support, checks or balances – personally I think this is less of a concern when relating to someone’s experience of their supermarket shopping trip than raising their hopes about their ability to influence their lives, their community, their health service or something else of significance for their future.

In my opinion one feature common to both the concept of value and the intention or wish to do good is ethics. Without a consideration of ethical standards I’m unclear of how anyone can have confidence that they aren’t doing harm, or indeed that they are making a positive difference and doing good. The topic of ethics came up a few times at ServDes – probably more in the informal break and lunch conversations than in the papers, we discussed it in our EIP unconference and Sarah Drummond made reference to it in her case study presentation, building on some of our earlier conversations and some topics we’d thrashed around the night before. Sarah was reporting the Getgo Glasgow case study and drawing on her experience gained through her Masters studies, you can read her blog post about it here. Sarah’s blogpost that followed her presentation drew heavily on Don Norman’s post, Why Design Education Must Change, which deserves a blogpost in its own right to continue the conversation. Don’s post complements the unconference discussions we were having around the use of evidence in design, he states:

Science is difficult when applied to the physical and biological world. But when applied to people, the domain of the social sciences, it is especially difficult….Designers, on the whole, are quite ignorant of all this science stuff. They like to examine a problem, devise what seems to be a solution, and then announce the result for all to acclaim.

I’ll discuss this further in a later post but would like to think that the time is coming when designers will freely, openly and confidently discuss the ethical implications of their work. Which brings us on to trust and transparency. I’ve been digging around trying to learn more about service design for just over a year now; the notion of designing for services make sense to me, I am certain that service and experience of service is as, if not more, important than product – my interest is in the journey, not just the outcome, and yet I was tentative about attending ServDes. In part this was because I had followed the SDN (Service Design Network) conference in Berlin from a distance, dipping in and out on twitter, and was even more sceptical about service design at the end of it. Throughout that conference the twitter stream was predominantly self-promotion, lots of patting on the back, lots of bigging each other up, very little critique, discussion or reflection – obviously I wasn’t there but from the outside I was left underwhelmed and sceptical about the value of attending ServDes!

For those of you reading this with an understanding and unquestionable belief in service design I’m sure this may come across as quite harsh or unduly cynical, however I consider myself to be a service design agnostic – I’m just waiting for more proof! I was a little nervous about how I would find ServDes and how open people would be to discussion and debate, to questioning and challenge. It is fair to say the whole conference experience far exceeded my expectations from this regard; I met some fantastic people who seemed equally ready to have these discussions and I think some were even seeking them (that or they were all just exceedingly polite with me). I found a humility about service designers which on the whole I had not felt before – maybe that is what comes from immersing yourself in someone else’s discipline, maybe it was the effect of people being able to be honest and let their guard down (in the absence of many clients), maybe it was an environment created by the explicit focus of the conference on openly discussing challenges in the field or maybe it is just the stage in development that the discipline is at, I’m not sure which but I was blown away by how honest (some) people were about not having all the answers. For me there is a real need for trust and transparency – designers don’t have all the answers, none of us have all the answers, so the earlier we admit that the easier things are. From what I heard at ServDes there is very much a focus on multi-disciplinary working and/or gleaning tools and techniques from many different established disciplines and for this to be successful, people need to be honest. To build successful and ongoing relationships between customer and client, between designers and users, people need to trust each other and be transparent in their dealings.

Which leads on to my final reflection about shared expertise. In my experience to date in life, most progress is made working in a team, with a range of people who between them hold a broad spread of skills, abilities and approaches. I can’t imagine that successful design is any different. There is an absolutely solid evidence base about what factors help and hinder multidisciplinary working and lead to best use of shared expertise. Common challenges are around identifying a shared starting point, a common language, a way of working and creating an environment where people feel able to question the status quo and admit when they don’t have the answer. ServDes was a great success for me in this regard – the designers, marketeers, students and academics I met were all open to my alternative approach, in fact I felt very welcomed into the conference (no small achievement for someone with a below par starting point, a different professional language – evidence anyone?, and an irritatingly challenging approach to learning new stuff – which is a glossy way of saying if I don’t understand something I tend to ask too many questions); I very much hope that the conversations that were started at ServDes – both in person and through twitter – will continue to develop over the coming months.

A massive huge TACK to everyone from the Cognitive Science Dept at Linköping University who arranged ServDes; to all the volunteers and especially to Stefan, Johan (on the left) and Fabian (on the right) for the very generous Swedish welcome and the awesome conference.

Legacy?

I was away last week when the final episode of Young, Autistic and Stagestruck was shown on Channel 4 – you can still catch it on 4OD. This series followed nine young people with autism as they worked together to put on a play – you can read about the two previous episodes here and here.

The final episode focused on preparations for their show and culminated in the performance. An outstanding achievement by all that took part – the young people, the directors, choreographers, drama therapist, care team, their parents, family and friends.

When I sat down to watch the first episode of this series I was blown away by the magnitude of the task they were undertaking; but also immediately had concerns about what the experience would mean for those taking part – not just in terms of the actual day-to-day challenges but more in terms of legacy – or lack of it! Nearly all of the young people or their parents profiled in the show talked about feelings of isolation and loneliness, the struggles they face, the fear of failure or of making mistakes. Yet here was an opportunity for them to work with other young people, who they could relate to and at some level who they understood, to create a masterpiece. Young people, hormones, shared challenge, friendships, freedom and expression, stage fright, love of the audience – fairly powerful stuff at the best of times, perhaps doubly so if you are sensitive to stimulation. It was always going to lead to highs and lows for all those involved.

Jonathan, reflecting on his experience, states:

I guess I’m sad that we have to leave and it’s going to be all over. This was a fantastic experience and I just feel better in myself than I used to feel knowing that I’m not alone.

His mum comments that on a day to day basis he’d been the  happiest that she had ever seen him. It wasn’t clear from the programme what support was available to the young people and their families as the experience ended….but the final shot before the credits stated that all the families had kept in touch.

This got me thinking about my recent struggles with jet lag and a general lethargy I had to re-engage with my life when I returned from my holiday; it reminded me of being a teenager who went off to my first guide camp, had an amazing fortnight and then suffered from what my mum dubbed ‘post-camp blues’ for the following month where I pretty much struggled with no longer being part of something bigger, with not having my mates around me, and with having to face the reality of returning to school.

I really hope that there was ongoing support for these young people to readjust to life away from this experience. Those feelings of ‘being part of something’ are so strong it would seem essential to me that there was some ongoing legacy and structure for dealing with the inevitable come down and losing that sense of belonging. Something that is particularly acute for some of these young people who have already previous experience of being excluded from school and their friendship circles.

This whole question of legacy is a far broader one than just support in this instance. How do we structure support so that people do not become dependent on it? Better still how do we structure it so that the support can be withdrawn and the individual’s and their community can provide the support for each other? How do we genuinely build capacity in these situations?

Primum non nocere – first, do no harm

I guess this all boils down to essentially being a matter of ethics, motivation and intervention – there is more of a discussion about that over on @fergusbisset’s blog – check out the comments from Sarah (@rufflemuffin) and myself for more about this! Ferg’s post was discussing motivation and design thinking but I think the issue is of equal importance for those providing support or intervention in the shape of services, as much as those who are questioning how services are designed and developed. What is our motivation in the first place? How do we ensure that the person receiving services are central to them? How do we support the young people involved in this venture to design, control, and participate while also ensuring that we leave a genuine, lasting legacy once the curtain falls for the final time?

I look forward to hearing your thoughts on this