Reflections of a medical encounter

After suffering from migraines for the last 17 or so years I went and saw a neurologist this week. I average at least one migraine per month. I get the severe and incapacitating kind of migraines that leave me nauseas and vomiting and basically horizontal for a minimum of 24 hours. I don’t get aura that many people get, which means often the prodromal symptoms are quite vague (hunger, yawning) and I’ve eliminated obvious things like red wine from my life (alas). Generally I’d describe the pain as 8/10 – so, pretty horrible experience that I don’t think I’d wish upon anyone.

I’m not sure why it took me so long to seek specialist medical advice. I’ve seen a lot of GPs and they didn’t seem very concerned about it – although perhaps I was too blasé or resigned to it myself.

The thing that prompted it was recently getting a migraine for 3 weeks straight – sufficient to make me thing: “Enough!”

So all I knew about my specialist was that she had an interest in migraines (‘good!’). Overall, it was a very helpful and interesting – she deepened my knowledge and, as importantly, gave me a road-map of how I can better manage and prevent them.

That said, I’m a little a little embarrassed to admit that I was a bit intimidated; despite the fact I am an intelligent and grown woman! Unlike when I see my GP, I was seated in front (not beside) the specialist’s very large and impressive-looking desk – and it’s amazing how that immediately set the dynamic of the relationship. Also unlike my GP, she was quite brisk, rather dismissive (even exasperated) of my questions and not very sympathetic (the sole online review described her as ‘rude’ and I would certainly agree!). Admittedly I’m sure she sees many more serious cases – brain tumours etc – but surely this is irrelevant in the service she provides me?

I also found it perplexing and disappointing that she was completely disinterested in the data I’d brought along (I use an app to track my migraines along with my periods).  How far we still have to go to integrate technology into consultations (if this is any indication)! Given the massive growth of use, sophistication and potential of health apps, healthcare professionals need to adapt and incorporate these tools into their practice.

The experience also made me reflect on young people seeing their doctor. There is good evidence to say that staff attitudes – including respect and friendliness – are critical in engaging young people in health care settings. Given that young people have the lowest rate of seeing their GP, ensuring they have a positive experience when they do attend is hugely important.

Thankfully, my understanding is that GPs are generally better trained and experienced these days in communicating and working with young people.

Ultimately I actually felt empowered by the experience which is a really what most of us – including young people – want from any medical encounter.

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Transit lounge

Last week I finished my interviews with general practice staff (practice managers and receptionists). I interviewed 11 people in total. The interviews took me across Melbourne into a range of practice types and sizes – from a small (3 GP) practice in the generally more disadvantaged (lower socio-economic) western suburbs to huge (16GPs) corporate, multi-site practices in the north and east.The aim of these interviews was to understand how the administration staff work, how technology is currently used and to investigate how they would see a pre-consultation screening app working in their setting most effectively.

I’ve spent the last week listening back to the audio and here are some reflections:

  • Firstly, I now have much more respect for this workforce: These are highly competent and professional people who have to juggle multiple demands, from (the wide range of) patients to owners to GPs.They are also generally highly committed and engaged in their work – quite a few having worked at their practice for 10 or even 20+ years.
  • Practice managers have the potential to be the conduit and gatekeepers of if and how innovations or changes are introduced and implemented into the practice. So it’s important to be able to articulate and argue the benefits of the new practice to them, their GPs and their patients.
  • Apart from the clinical and booking software (and the automatic importing of electronically received medical test results), technology uptake and integration is slow (the amount of scanning that is done was a surprise). Perhaps because there is so little time and little incentive to test and implement new technology. All practices still use paper forms for new patients, though there is a recognition that this needs to change in the future with a few introducing online bookings and facebook pages.
  • SMS seems to be widely used for appointment reminders and, in some, to notify normal results – integrated into the clinical software and viewed as making their job easier.
  • Patient satisfaction and care is important, but so is ensuring staff are happy and any new innovation does not impact too negatively on their capacity to see patients (and earn money).
  • Some GPs will not want to be part of the pilot. These are ‘wait and see-ers’ – they don’t want to commit to new practices without first seeing benefits and that processes have been worked out.
  • Parents are generally the main point of contact for young people under 18; often parents will attend reception when they come in and reception don’t even really talk to them (or have their contact details) – this has implications for my final study, not least including consent [more of this in future posts].
  • All practices work in slightly different ways, and have varying willingness and flexibility to incorporate new ways of working. This seems entirely justifiable! In a sense this is the most challenging (albeit realistic) finding – as it means it presents a real dilemma on how I design my final study…[more of that in future posts too]
mdxdt @flickr, creative commons

mdxdt @flickr, creative commons

At the moment it feels a little as if I’m in a transit lounge of my PhD – not necessarily in a bad way. I’m not sure if this is the most apt analogy, as it implies waiting and inactivity, when actually it’s much more active that that; I’m going back to the literature, reviewing my data, reflecting if my original design for the final study is the best way to go –  basically working out which is the best plane to catch (or maybe the best plane to fly!). It’s easy to feel a sort of inertia, or the creeping alarmist thoughts that ‘I am going backwards’, ‘I have achieved nothing!’ etc.  but part of me also realises this is actually really important and productive time.

It’s getting real!

In the last few months I’ve managed to organise and run 3 participatory design workshops – 2 with young people (aged 14-17, and 18-25) and 1 with GPs. These workshops had two main aims: to identify barriers and facilitators of implementing a screening tool in general practice for young people; and, to design a prototype.

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Generally they seemed to go pretty well! Overwhelmingly the participants were engaged and excited about the tool (phew!), and, as importantly, they provided many valuable insights and feedback that, at times, challenged assumptions I’d had.

Without me quite being conscious of it, I think I’ve had a vision of the tool that has kept getting bigger and more complex (‘perhaps it could do X’, ‘how cool is it if it could do Y!’) when, in fact, one of biggest messages from both young people and GP was ‘keep it simple’ and, perhaps, ‘stick to the core purpose of the app’ – other functionality is nice to have but isn’t really necessary.

It’s reminded me again that the core purpose isn’t really just about saving time; getting sensitive information efficiently. It’s more than that – it’s more about the technology providing a ‘tickit to talk’ – much in the same way as a dog provides a way for strangers in the park or street to engage with each other. I really love this potential of technology – it’s a tool that is facilitating more meaningful and honest connection; in my case that will in turn, ultimately better health outcomes.

Understandably, one of the biggest concerns for GPs was around risk and managing when and how information came to them (a particular issue if young people were filling it out a day or more before their consultation). I’m hoping we can come up with a solution for this.

Young people were very worried about being judged (e.g. if I say my partner has been violent towards me, will they label/pigeon-hole me). This certainly reflects the research about help-seeking but I think as someone who has worked in the health sector for so long, it’s easy to forget what a huge barrier this is. But the good news is that they respected their GP and recognised that generally they could provide impartial, educated advice and support (even if, they didn’t really realise this includes prevention not just acute health concerns).

They suggested that the language and contextual information of the questions were critical in their use and honesty with it. There is a real need to further involve young people to refine and improve the questions (interestingly, the widely used HEEADSSS assessment which I am planning to use/adapt, doesn’t seem to have been developed with young people’s involvement).

Not surprisingly for digital natives, young people were very quick to suggest future iterations of the tool and how it could be used to complement existing services and create a better experience for young people (e.g. GPS of youth-friendly, bulk-billing clinics; ability to share data with other health professionals). Alas the current government’s electronic health record is a dinosaur in comparison.

It felt good to get out in the real world, talk to real people who are the target audience for my project; a good reminder of what and why this is doing – the potential to make a real difference. My immediate task is to talk with practice staff – from previous research it would be best to minimise the need for them to be involved; they are gatekeepers, but generally don’t have the time nor the interest for additional work (e.g. identifying young patients, describing and giving the tool). It’s a critical piece of the puzzle.

I have a number of concurrent major tasks over the next few months; finalise the final study design (more of that in upcoming posts), write and submit ethics for it, write up a 2 1/2 articles.

Game on!

Recruitment

I’ve started recruiting for my first (of two) major study (whoohoo!) – a series of participatory workshops to design a psychosocial screening app for young people to use in general practice: with young people, GPs, practice staff, and – if necessary – parents.

And I feel good! (and today, I’m refusing to put a qualifier on this!)

I’m conscious that I often (mostly!) use this blog to write about my anxieties and frustrations of PhD life – that’s not such a bad thing. It’s not intended to have a wide audience and it’s very much more about getting into the habit of writing, increasing my critical writing and ‘writing as thinking’.

Perhaps I feel good because I am doing something that I have done before – running participatory workshops. Granted, previously I’ve always been part of a collaborative team and in a professional context. But still! Perhaps it’s also because I get out of the isolated vortex of literature and get some good hard data that will be useful and relevant in the real world. And have some fun seeing people co-create solutions to problems that can have a significant impact on their work and/or health.Young and Well CRC_Toolkit_1

One of the great things about with participatory design is that it puts explores technology use within its context, which opens up new issues for how it will be used in situ. At the core of the workshops are exploring the following:

  • How can the app help young people feel more engaged in, and aware of, their health and healthcare?
  • How can the app be designed to empower young people in their consultations with their GP? (not just the app itself but where and how they use it)
  • What are the barriers and facilitators for the app to be integrated (normalised) into routine practice for GPs and practice staff?

I have been fortunate that ethics was very straight forward. The biggest learning has been about the process for recruiting GPs and practice staff-you know, people need to plan and fit this into their busy lives (whodathunkit?!). And that despite the awesomeness of participatory workshops, this isn’t necessarily going to be appealing to practice staff (I have been told by other general practice researchers and GPs)– they simply don’t have time or inclination to travel from work into the CBD in their own time. So I’m thinking about how I streamline some activities for quick and dirty outreach.

I think my tight timeline will take a hit and will have major implications for developing the app and the next study – a case study, which by definition needs time to implement and whose design still needs attention (taking me into third year, by when I am told ‘data collection and analysis must be done!’).

But for now – I’m enjoying the excitement of organising the workshop activities and ensuring I explore and capture key insights and outputs.

Hunger

I’ve lost my hunger. Literally.

It’s a weird sensation and not one I’m very familiar with. I’m not nauseous as such; I simply have no appetite and no interest in eating. Admittedly I have always had a complicated relationship with food. However, the issue has always been trying to contain and curb my hunger into submission, rather than dealing with its absence.

At first part of me was thinking ‘This is GREAT! – I don’t have to cook or buy food. I’ll save money! No dishes to clean! Plus I might even lose a little weight’. Of course, the rational part of me realises it’s not a healthy or sustainable situation.

Maybe it’s my body re-calibrating after the excesses of the Christmas period. Probably more immediate physical causes are having a migraine and my period. The fact that I was was feeling bewilderingly overwhelmed last week may well have also contributed, not to mention I have a (self-imposed!) mid-year review with my supervisors next week.

As someone who has been in therapy a long time, I can’t help but wonder if my loss of appetite is symbolic of something more profound. At the risk of going all Louise Hay on you, is my lack of appetite representative of in my various dissatisfactions and disempowerment at work/study/personal life – to what extent are these caused by external constraints; i.e. locus of control (this is probably a thesis paper in itself)? And if so, how can I enact real change if I don’t have clear goals – change that I haven’t been able to fully realise previously?

I spent quite a bit of time yesterday reading through the Thesis Whisperer’s Valley of Shit blog post and comments; It was reassuring to read how just common loss of perspective and confidence is for PhD students. It certainly prompted me to reassess my own current experience, reflect on my motivation to continue to do my PhD. Am I haunted by self-doubt and inexperience? Yes? Am I still excited and interested by the topic? Yes, yes I am!

Thankfully I’m feeling a bit better; I’m able to eat at least one or two small meals a day. And overall, I’m actually feel more energised and hopeful.

Welcome back

Like many others, today is my first day back to study after holidays and like many I was not feeling that excited about (ok, kinda dreading) it. I’m easing my way in – working from home in my pyjamas – though the gardener’s leaf blower has just started outside ending any remnant of holiday tranquility!

I had considered working on my phd right through Christmas – well apart from, say Christmas and Boxing Days, however ended up taking half of Christmas Eve off until today. And I’m glad I did. Yes, there were moments when my thoughts flicked briefly to it, but overall I think I needed to have some dedicated time away from it. I’ve always found it much easier to fully immerse in holiday at this time of year – with much of the population on holiday, taking time off feels very much socially acceptable.

I stayed at home, but I did things like clean the kitchen drawers, clear out my wardrobe and do some gardening. Oh I also managed to rewatch a good chunk of the most excellent Battlestar Galactica, went horse-riding, ate an impressive amount of stone fruit, read a trashy novel, listen to the cricket and rode my bike quite a lot. That said, I think the major benefit was just to relax-mentally and physically.

The reason I was dreading returning to study is the amount of work I have to do, particularly in the first few months of the year. And the fact I already feel woefully behind and worried I won’t be able to get through it all.

First up, I need to finish one paper (thankfully mostly done), while I have a large chunk of secondary data analysis to do and then write into a paper. At almost the same time I have 2 major studies to prepare, conduct and analyse. I’m trying to stay focused, break it down into small, daily tasks in order not to feel overwhelmed. Also reading Patter’s most recent blog was oddly comforting, perhaps in the knowledge that I am not alone in facing a mountain of work!

Wishing everyone a productive start to the year!

Reflections from OzCHI

On Tuesday I travelled to Sydney to participate in the Doctoral Consortium, part of the OzCHI conference (OZCHI is the annual conference for the Computer-Human Interaction Special Interest Group (CHISIG) of the Human Factors and Ergonomics Society of Australia).

Some reflections:

  • Practice is really important: At the start of my PhD practicing in front of my supervisors didn’t even occur to me – I thought it was optional (Wrong!). This is probably because I was used to being so autonomous at work and also knew my subject so intimately that I was confident with minimal practice. It’s such a different situation in academia, and for good reason; your supervisors’ names are associated with your work and it is their reputation at stake. So they want to ensure that they are across everything you say. Even though it felt rather painful, practicing in front of my supervisors was actually enormously beneficial. I ended up substantially reworking my presentation and it was much better for it.
  • Leaders of the field are nice people too: One of the Responders at the Consortium was Professor Pelle Ehn. He is one of the founders of the HCI field, having led research developing technology with workers in Scandinavia in the in the 1970s. My supervisor kept stressing the great opportunity this provided and how it would be worthwhile to read his previous work and even reference his work. While this was good advice, I started worrying about my inexperience in HCI. It was a lovely surprise to find a very friendly person and a very supportive atmosphere (no scary academic monsters here!).
  • Balancing interdisciplinary nature of the PhD continues to be a challenge, particularly in terms of thinking about who examines my thesis (and the inevitably biases and preferences each discipline brings). Health and HCI aren’t always incompatible. For instance, HCI seems to be more focussed on the design and development of technology, while Health is (generally) more focussed on measuring outcomes (in a scientifically rigorous method).
  • Importance of passion (to me anyway): Okay this isn’t necessarily something directly from the Consortium. It’s linked to the interdicipline point above. Another Responder, Associate Professor Frank Vetere from the University of Melbourne, talked about the need to have a main focus or narrative in your work; ‘What area is most important to you?’ I guess this should be obvious, but it’s so easy to lose sight of it in the day to day slog and with so much reading to distract you. It was evident that this is something that many of the presenters were struggling with. And it’s where the interdisciplinary PhD becomes problematic and messy. Probably the most challenging question I had was: ‘What theory or body of work are you extending? What is your theoretical or research contribution?’. This is a fundamental question and something I need to untangle in the coming months (which one to chose?!).
  • The meaning of ‘social’ goes beyond interactions, speaks to ‘the feeling of being valued’.  This is a reported quote from Associate Professor Frank Vetere at this morning’s keynote presentation at OzCHI (from Twitter, as I’m not at the conference). It came through as I was writing this blog and it’s THIS which excites me about technology and reminds me that looking into dry systems theoretical frameworks is as much about enabling the social as anything. It reminds me of the potential of my research to have an impact.