Connected or disconnected health?

A theme that abounds in both my own and in blogs that I admire, is choice of language.  Working with people who live with long-term conditions, I’m acutely aware of the effect communication skills (good, bad & ugly) can have on the “doctor-patient” relationship.

THE-GOOD-THE-BAD-BILLY-PERKINS

There is much good evidence for this relationship being the most critical factor predicting good outcomes in conditions like type 2 diabetes. So. Language really matters.

Then why is it that I cringe when I hear the various terms that get used to describe modern means of communication between healthcare professionals and the people they serve?

You know what I mean: m-Health, digital healthcare, virtual consultations, “Technology enabled care services”, “Messaging enabled care services”, Telehealth, Telecare… the list goes on and on… and on, what’ll be next…

Teletubbies

Yet these terms do describe means of communication that are immensely helpful to the people I serve as well as myself.  In my opinion we need to find a better descriptor if we are to effectively market these tools and allow them to become business as usual in NHS healthcare. I like the term connected health, there’s even a #connectedhealth 🙂

Today has been a good example-

This morning started off with an in-patient ward round, I was providing advice and guidance to our teams looking after people with diabetes within the hospital.  Much of that work is now accomplished remotely, the big difference being access to the right information upstream.  Being able to view both our electronic health record and also the Summary Care Record (medications prescribed by her GP) meant that I recommended a big change in treatment plan for one patient who has a very low HbA1c and is on insulin.

Such decisions can be scary, for healthcare professionals as well as patients!  Do nothing and this patient would be at risk of severe hypoglycaemia: act incorrectly and the patient risks poor glucose control…

Yet the safety of my decision was assured because we can remotely monitor the effects of this change on the patient’s capillary blood glucose levels.  If things aren’t working out I can quickly reverse the decision.  We’ve had the ability to offer advice in this way only for around six months now.  It feels good. It feels safe. It feels connected.

It also means I have more time to fit in other tasks & duties, so by late morning I had a scheduled telephone consultation. The background was that this person wished to cancel their clinic appointment with me for tomorrow, work was just too busy for them. Yet my excellent secretary offered a “virtual consultation” as an alternative, giving them the option of Skype, FaceTime or a simple telephone call.  They opted for the latter, as they were at work &

  • we had a cordial conversation
  • I exchanged information about her lab test results
  • we agreed a change to her treatment plan
  • we wished each other a Merry Christmas

She was more than delighted with the experience, she said. Now that gave me a warm glow too and I tweeted about it

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No sooner had I tweeted, an iMessage popped into my inbox.  It was from a person whose preference is for a mix of Skype consultations with SMS.  Our exchange went something like this, the times are real-

11.58- Had my blood tests on Friday thanks for letting me know how they look

13.05- test look marvellous [result supplied], how do you feel about cutting down the dose of your tablets? Would you like to Skype later on today?

13.10- that’s great news [tells me dose of tablets], I feel well and don’t have other questions so if you just let me know what to do about the tablets that will be fine

13.18- Great, suggest you please halve your tablet dose, I can fix you up with a prescription if you like or we can do this through your GP? Will also give you another blood test form for next time 🙂

13.21- yes please, if you could leave a prescription for the first supply of the new dose on your reception desk I will pick it up on my way to work in the morning.  Plus I already have a blood test form for next time.  Have a great Christmas!

13.25- all done and waiting for you at reception. I’m around in the morning, so please do say hi when you pop in, otherwise Merry Christmas to you too! 😉

And that too felt good. It felt safe. It felt connected.

It’s now been over a year since we’ve been offering virtual consultations in my department. This meant 1st having a fit for purpose Wi-Fi system, then acquiring the hardware was easy, we use iPads.  So technology has not been a barrier.

More difficult has been convincing the people we serve & my colleagues too, that communicating in this way can be really useful.  Taking this to any kind of scale & thinking of it as business as usual is a huge challenge.  On a microscopic level ours is an important lesson for those seeking to ensure success of the ‘NHS Five-year Forward view’ and the ‘Personalised Health and Care 2020’ agenda.

So I like to refer to this as connected health.  Do you want connected health? Yes? OK!  Together, let’s make #connectedhealth business as usual.  We’ve all had enough of the alternative for far too long 😉

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Touch site, sound?

I’m a great believer in recycling: “Touch site, sound?” was the title I gave to a presentation I first made in 2009.

The audience was healthcare professionals, mostly GPs and practice nurses.   Cheeky of me to re-use my materials in this way? Perhaps, but hey, why not!

Since fatty lumps at injection sites (lipos or lipohypertrophy) are experienced by the majority of people with diabetes who use injections, I truly believe this message will have much greater value when it is in the hands of people with diabetes.   Let’s find out if I’m correct…

lipohypertrophy

I’m a lucky doc, I get to work with some excellent people.  One of these, diabetes specialist nurse Sister Jagjit Kaur, I credit with making me think much more about the injection sites and problems than I ever had before.  Here’s our rose between two thorns at DUK 2009, presenting our first informatics work (we’d achieved a change from 0% to 75% for pre-pregnancy advice to women with D of child-bearing age in a large local GP surgery 🙂 ).

My first Informatics project c2008, at DUK 2009

My first Informatics project c2008, at DUK 2009

 

A big thank you to Jagjit- she showed me just how important these factors are to people with diabetes trying to get stability of their glucose levels and reliable effect of insulin.

Indeed, to me, in theory the “boss”, the importance of these was a total blind spot. It had simply not featured in my training to become a diabetes consultant.  I would spend far more time considering differences between various types of insulin product.

So began a journey that saw us

  • Survey our patients concerning just how common lipos are (over half) & whether patients do get examined regularly (…er, no).
  • Become involved with the work of the Forum for Injection Technique, here are their latest recommendations (I’d so love to be more involved, if you are reading this FIT peeps…)
  • Make conference visits to the Becton Dickenson (BD) stand & visits from their reps. essential to get hold of the best educational resources for our patients

We were really knocked out by a European survey revealing that

  • 75% PWD who do not ‘rotate’ injection sites have lipos
  • 25% PWD who do ‘rotate’ injection sites still have lipos

Why does this happen? What makes a difference? Will lipos always go away. Hard to say.  We simply do not know enough about injection site issues.  It is reckoned you minimise your chances by

  • always moving 1-2 finger-breaths from one shot to the next and not going back to that spot for a while
  • never reusing the same needle (PWD were historically very frugal, a hard habit to break)
  • Using an appropriately short needle (4, 5, 6, 8 and 12.7 mm are available…)

At the last DUK conference, BD had one of their Reps, Kinsey Jones, great guy who has T1 himself, allowing delegates to examine his tummy lipos.  BD are recommending a ‘formal’ examination, on the couch, with healthcare professional applying K-Y Jelly and gently but firmly exploring with gloved-hands.  I’m not sure how that would go down with PWD.  I wonder about the scope for self-examination.  Do you think that may work?  Maybe backed up by show-and-tell.

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A seminal moment for me was listening to a conference seminar from a BD expert Dr Ken Strauss at an European Association for Study of Diabetes. Some of his early work is here In 25 mins I learned the following

  • Epidermis and dermis is only 2mm thick, but as the latter is ‘scalloped’ it is a max. of 2.8mm thick. Any needle longer than 3mm will reach the subcutaneous space
  • 50% adults have lipos… but in kids the figure is 70%
  • Whether you are old/young, male/female, fatter/thinner, any race, 4mm needles will be plenty
  • Teach PWD to rotate early, they do; try to do this later, they don’t…

Does this REALLY make that much difference to insulin absorption and action? You tell me what you think.  It certainly did in the cases in my talk and seems to for many of the PWD I meet each week.  My own opinion is that this effect is as least as big as related issues of injection technique, e.g. resuspension of mixtures, differences between body areas, ambient temperature etc.  Whatever PWD can do to make the effects of insulin injections more predicable is certainly money in the bank.

I’m a pragmatist when it comes to clinical research- it really ought to be for the direct benefit of the people I see, if it is to be worth doing.  I’m still hopeful that one day soon my team and I can engage in some injection-site research, I think this will become a much more important issue as awareness grows.

In the meantime the lovely people at OurDiabetes #ourD have asked me to host a Twitter chat on Lipohypertrophy & insulin injection technique one Tuesday night soon.  The format is to choose 5 key questions which PWD answer between 8-9pm. Please leave a comment & maybe suggest what questions you would like to hear answers to.

I was going to ask PWD if they would wish to share lipo-selfies during that Twitter-chat. Would that stray over the boundary of good-taste, or could it help break down a D-taboo?  Thanks for reading.

More background materials here.

What gets you out of bed in the morning?

I’m feeling slightly abashed this evening. It’s been diabetes blog week and I’ve only managed one contribution… Well, that’s better than none, but I want to squeeze in a quickie before the week’s end.  Here goes, subject: what can get Healthcare professionals moving?

Get out of bed

Take a look at this YouTube video, https://www.youtube.com/watch?v=lOP2oxGigFQ

Focus on what he says 5 minutes 20 sec in.  It has the potential to change the face of health and healthcare delivery…

In his excellent presentation on improving patient safety Dr Peter Pronovost tells us how there are three things that may get healthcare professionals ‘out of bed in the morning’-

  1. Coercion- e.g. more/stricter regulations, more frequent CQC visits…
  2. Financial incentives- e.g. carrots if you work in primary care, sticks if you work in hospital care.
  3. Trying to inspire- coproduction: patients and healthcare professionals working together as part of a social movement

We use the first two rather a lot, but there is not much evidence that these work in the way in which they are intended.

Roy Lilly’s blogs at www.nhsmanagers.net regularly makes the strong claim that

“you cannot inspect quality into systems”.  

Businesses that understand this have learned to use quality control & management techniques to good effect, rather than inspection.

There is some evidence that incentive payments to GPs such as the quality and outcomes framework, or QoF, can have an effect. Yet look more closely and there is also a story of how incentives can lead to gaming & shifting of the goalposts.  If you don’t believe me, take a look at GP Contract website, you can look up the QoF figures and outcomes for all the conditions with incentives.

Look closely at the diabetes figures for your own practice and try and work out why a proportion of people with diabetes are excluded from a number of the indicators.  I sometimes show figures to individual practices and even they scratch their head.  Figures for diabetes care at my own GP surgery can be found here.  Why, for instance, are 62/387 people excluded from DM17 ‘cholesterol under 5.0’?  There are certainly some legitimate reasons for some patients to be excluded, but when I’ve looked at these returns, which are all linked to payment, none of this is transparent or open.

Financial reliance upon incentives creates a mindset to oppose any further developments until new extra incentives are offered.  One recent example is the move towards opening up record access to patients.  Things are beginning to happen because of incentives specifically for making and changing appointments and ordering prescription repeats.  Even though most GP systems could allow records access right now, it is rare to find this happening.  A notable exception to the rule is GP Dr Amir Hannan, his practice website is open to all and makes inspiring reading.  From next April, there will be extra incentives for all GPs to offer… very limited record access.

So how about we try number 3? It surely must be worth a go?

I do so admire that famous Margaret Mead quote:

“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” 

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Could this be the right time for a social movement that brings together patients with long-term conditions like diabetes along with healthcare professionals?

I understand many barriers stand in the way; it’s probably a good thing that I doubtless do not know them all.  What I do not accept is that these will ever be removed by fear/coecion or by being incentivised to do.

Let’s start a social movement.  Hang on… a revolution has already started.

“A social movement that only moves people is merely a revolt. A movement that changes both people and institutions is a revolution.” 
― Martin Luther King Jr.Why We Can’t Wait

Pile ’em high. Sell ’em cheap.

This week, I have mostly been having twitter conversations about inflexibilities built in to diabetes specialist care.  Experiencing this type of problem? To quote Douglas Adams, “We are sorry for the inconvenience.”  When I reflect on this, this is the image I see in my minds eye:

How to reach us

 

 

I’ve met many people with diabetes who are passionate about helping dismantle these barriers and obstacles, social media has been invaluable in helping me connect them (you!), whilst at the same time it’s also been really useful in helping me to extend my circle of fellow healthcare professional colleagues, many of whom are doing amazing work to change this.

The subject of this short blog is, why has diabetes care been regarded as ‘crowd control’ by many services & healthcare professionals?  Let me unpack my ideas…

My specific diabetes training began with some wonderful, inspirational bosses in a service which was nationally and internationally regarded.  I learned so much from them.  Yet there were aspects of the service which lacked any kind of compassion, dignity or respect.

Picture the scene, NHS in the 1980s. The clinics were truly enormous. No, I’m remembering it all wrong… they were humongous.  The waiting area resembled an aircraft hanger with rows of people seemingly as far as the eye could see.  The timing for the clinic was… well, a movable feast.  It was a war of attrition – who would crack first? Would people with diabetes get fed up and go home at 7 PM, or would they,  despite disapproving looks from the clinic staff, remain bloody minded and stay to the bitter end?

When it was your turn to be seen consultations were held in an open plan space (designed, perhaps for minor surgery, very stark and clinical) with several desks, simple plastic chairs (just one for the patient, no relatives or friends were allowed) and no privacy at all.  As a very junior doctor I remember finding it surreal when a patient across the room, hard of hearing, was having such a loud consultation with their doctor that my patient and I just had to wait until they had finished.

Talking to an ex-diabetes specialist nurse who worked at one of the U.K.’s first dedicated diabetes centres, our patients ‘didn’t know they were born’… At their institution, the doctor sat at the desk in their white coat; whilst there was a chair for the patient, this was pushed in hard under the desk.

Woe-betides anyone who dared pull the chair out and actually sat down…

last see dad

When I was on-call, one of my first evening jobs was to prescribe insulin for every patient in the hospital who needed it.  Probably 75-90% were on fixed-mixture insulins, names like Protophane (still used in Europe I believe). Looking back on those days, it seems so crazy that the most junior doctor in the hospital was being asked to make prescribing decisions about the most dangerous types of drugs (this was also true for warfarin and for a drug called heparin, gladly safer versions of heparin are now in more widespread use).  On each ward I would be presented with a stack of insulin prescription charts along with glucose test result-charts.  There was no sense of what type of diabetes the person had, nor the context (i.e. what was expected of their diabetes control, glucose would be higher during infection for example).

total wipeout

 

Here I am, attempting to make it through all my insulin prescription-jobs, before I could go and get something to eat after a long day at work… well, forgive me for using artistic license on that.  Did I ever ‘fall in the water’?  In-hospital hypoglycaemia rates suggest I frequently did…

When I became a consultant, I was determined that this would not continue.  Gladly my colleagues and I had the full support of our organisation in changing things.  That said, there still seems to be a belief the doctors and nurses should be measured by how many patients they can process in a session. That kind of thinking gives me my title for this blog, attributed to Jack Cohen, founder of Tesco’s.  Such an approach “sells people cheap“.

Our aim must be quality diabetes services, but most of the quality is around compassion, dignity and respect.  There is no point in being the sharpest tool in the box if all you do is to cut human relationships into ribbons.

In my opinion, there is only one show in town: patient experience.  Everything else we do leads us back to that.

 

Ethnography in Healthcare Safety & Innovation?

I’m hoping the title doesn’t scare you away!  Grab a brew, [wo]man up & I’ll tell you why I believe this could be just the job as the NHS tries to understand & promote safer patient care.  I must have learned something during that sociology course at Med School.

If you’d asked me what ethnography meant just over a year ago… well, I would have struggled, truth be told.  The ethnography wiki is good, but it does not illustrate some points I wish to make about its potential in healthcare, especially for improving patient safety.

Ethnog colour

This, the formal definition “Ethnography |ɛθˈnɒgrəfi|noun [ mass noun ]the scientific description of peoples and cultures with their customs, habits,and mutual differences”.

A more helpful and illustrative definition is within the title of this publication, aimed more towards commercial applications & business innovation.

My eyes your mirror

Last spring I was spending too many evenings soaking up Coursera offerings on ‘The Science of Healthcare Safety’  from the Armstrong Institute at Johns Hopkins, ‘Health Informatics in the Cloud’ from Georgia Tech and ‘Healthcare Innovation and Entrepreneurship’ from Duke.  Okay, I admit it –I’m a self-confessed MOOC junkie.  I’ve been trying to wean myself off lately, but I find this style of learning highly addictive.  If I was an academic, I would be very, very worried about what a disruptive innovation this is (I even took a MOOC on disruptive innovation in the autumn!).

Coursera records

‘The boy done good’ too I passed with distinction!  The more popular MOOCs do re-run, so be sure to checkout Coursera if you’d like to follow me down this path.  Other providers are available!

So, it was on that last one, innovation & Entrepreneurship that I first encountered the ethnography word.  The teachers were convincing in their assertions that healthcare entrepreneurs should grab a notepad and become a fly on the wall observing the processes, the workflows, the challenges, the frustrations, the good the bad and the ugly of modern healthcare. There they would see a better way, that gap in the market, unmask the unmet need crying out for innovation.  Whilst I like the National Geographic version of ethnography, this seemed to me a modern and highly practical way to deploy these skills.

ethnography simplified an ethnographer

So to healthcare safety. Never events are a complete misnomer.  At my trust we recently had a spate within one speciality, relating to one specific surgical procedure. When leaders at my trust discussed these sorry tales & we heard the stories behind them, it struck me that what I was hearing was that very similar errors were happening in series.  A new process had been brought in; standard operating procedures appeared not to have been significantly altered to accommodate to the change.  If there were theoretically 20 ways for things to go wrong, it looked like we were working through these error by error. Which one would be next?  Of course this is very easy to say in hindsight.  So, I got off that high horse and asked myself how can we find a better way.

And just like magic, Ethnography popped right into my head.

brainwave

My brainwave was thinking that perhaps an appropriate response to serious untoward events/incidents is to get proactive ahead of the mandatory table-top review; for somebody to perform the magic of ethnography.  I thought, why base a root cause analysis on statements and opinions of the protagonists, who are going to be feeling highly defensive about their role in the medical error?  Trained observers could be deployed to document what they see & feel in a highly objective way, a way which would be impossible for those intimately involved.

In fact, if this idea was worth anything, why not apply it before errors happen, beginning in all the key areas covered by never events.

I was listening to BBC Radio 4’s ‘Thinking Allowed’ earlier, and blow me down if they weren’t discussing ethnography.  One of the issues Laurie Taylor and his guests raised is that ethnography is not what it used to be; maybe its best days are behind it.  The problems – it is time-consuming & it does not appeal to younger academics (since it does not yield to conventional academic research and publication timelines).  Most importantly, that means it does not easily attract funding in the UK.  Where, the presenters asked, might funding for future ethnographic studies come from?

I work in diabetes and endocrinology clinical care.  We encounter errors much more than we wish to.  Perhaps, with support from NHS England & from research bodies like NHIR a partnership could be forged between professional ethnographers, academic institutions and the NHS?  Key processes, workflows and Standard Operating Procedures could come under objective scrutiny.  This has the potential to direct us to that elusive better way, to see the unmet need, perhaps even to reveal a gap in the healthcare market which could ultimately increase revenue for the NHS and its partners.

It would be a privilege to help apply this approach to preventing serious untoward errors and incidents that affect the 1-in-10 people with diabetes that come into hospital each year. Look at the National diabetes inpatient audit and its reports.  They make alarming reading.

It is said that we must innovate our way out of the financial morass the NHS finds itself in.  Maybe ethnography could send us on our way.  What I don’t know is whether anyone is doing this in the NHS already. If not, perhaps it’s worth a go.  If they are, all power to them.  Pretty please, let’s partner up?

50 Shades of Diabetes?

There. That got your attention.  Now. This blog is about the language healthcare professionals and people with diabetes use when talking about the diabetes human condition.

Okay, maybe I’m not playing fair.  If you feel cheated and only followed my blog-link looking for something a little more… well, prurient, then rest assured.  I will attempt to satisfy you… …later… …when I’m good and ready.

See, I’m good at this.  Maybe such power-trips come as second nature to healthcare professionals?

So to my thesis: The language spoken in diabetes care is often warlike, angry and designed to raise heckles. Aggressive targets. Tight control. Patient compliance. Medication adherence.  Adjectives such as strict, rigid & intense.  To those of us of a certain age, it might conjure up memories of Mrs Thatcher’s Cabinet ministers’ visits to Soho Miss Whiplash-types.

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Realising the importance of the language we choose in building doctor-patient relationships, it was interesting to look back at presentations I made in the past, this extract is from a PowerPoint made in 2007.

Back then, I began to see that choosing the wrong kind of language can distance our patients and even worse, cause us to see them as blame-worthy & as scapegoats:  “none of them take their tablets”, “they all say, ‘It’s not for what I eat’ “…  just two examples of the attitudes I encounter from health care workers (I won’t say professionals).

Recently I’ve been spending time with the doc, diabetes online community.  It’s been truly revealing,  a window into the lives of people with diabetes. I feel a sense of privilege to be let in.  Yet I was taken aback to find how commonly people with diabetes themselves use negative language to describe their feelings and behaviours. “On the naughty step”.  “Sometimes I cheat”.  “Follow the rules”.  “Like a trip to the headmaster’s study”.  What I have found especially surprising is how this jarrs with their otherwise confident, upbeat & engaged online persona.

Perhaps this becomes ingrained in people with diabetes by the attitudes of generations of healthcare professionals, grooves in a vinyl record that has become stuck?

I can remember vividly how my own personal attitude-adjustment occurred.  I also remember it was very painful.

Attitude-adjustment

I was in my second year as a junior doctor, SHO on a kidney unit.  I was just finishing up, taking a blood sample from a woman new to my ward.   As I was going, she said we’d met before.  I couldn’t place her, so she elaborated- we had met in the diabetes clinic. I must have said something like, ‘That’s nice’, but her next statement grabbed my full attention: ‘Yes,’ she said,  ‘I remember it was you that made me cry.’

I can only describe the next ~30 minutes by saying that she took me to the cleaners.

I sat. I listened.  I learned from her what a first rate a** hole I had been.  She told me the brutal truth that resulted from of the way I had talked to her.

I had judged her.  I had demoralised her.  I had humiliated her. I had reduced her to tears.

It was my turn for tears and for humiliation.

Well, she stayed several days on my ward. We enjoyed many more conversations and developed a close doctor-patient relationship and perhaps for the first time in my career, I came to know what that phrase really means.

Okay, you have been very patient.  I think it is time.

So, if you’ve read this and none of it cuts any ice, you might consider adopting the approach of Dr Kempner at Duke University in the USA.

For a more academic assessment see Robert Tattersall’s informative article.  Register and login for free if you’re a healthcare professional, but if you do so and you are not a health care professional… well… that would be VERY naughty now, wouldn’t it? VERY, VERY NAUGHTY…

“I see trees of green…” Personal health records

Well, it only takes a sniff of spring to send us into a frenzy of buds and blooms; in short I’ve began to get carried away as you can see from the title!

Maybe it’s because I’m on leave this week and I’ve had more time than usual to reflect on the great potential of shared records as we begin to embrace aspects of connected health.  I’ve thought about this from a range of perspectives, healthcare professional, carer, Joe-Public and also through the lens of our local diabetes support group.

So, in no particular order, I’ll kick off  with my thoughts as a carer.  Last Saturday I brought our pet rabbit Mr Hoppy to the vets (can’t say why without breaking our relationship of confidentiality, suffice to say he’s on the mend :p).

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And then this Tuesday I visited my father back in Wales, he’s been in hospital for close to 2 months now.  As it turns out,  Mr Hoppy appears to have a more comprehensive electronic health record than my Dad!

The fact that my father’s care is not connected has been the cause of many cancelled outpatient visits over the years, which led my father to create his own ‘personal health record’, a sheaf of loose papers, assembled from clinical letter copies. I remember him telling me with pride that on each occasion that he would ask his physician for a copy of the letter going to GP, this was stoutly challenged before they eventually acquiesced.  My father is not medical, but was quick to understood the enhanced safety and continuity of care that this gave to him.  Over the years, he’s even ‘curated’ a few outpatient appointments himself, actually providing the missing pieces of information that allowed the consultation to proceed, even though his doctor had first tried to cancel because of lack of notes.

notes crop

Unfortunately, my Dad did not have this information trove to hand when seen on the ward by a surgeon for his peripheral vascular disease two weeks back… plainly that surgeon cannot have had access to the right components of my father’s records either.  This resulted in a chain of events that would have led to an inappropriate transfer to another hospital for tests plus an assessment that had already been done four months earlier.  Thankfully emails and phone calls headed that off.  Don’t get me wrong, the team looking after him has been wonderful, but they and my father deserve better if we are serious about wanting a safer healthcare system.

Where I work in the West Midlands, some help is at hand from an ambitious local project called the Central Care Record. This is an example of health information exchange, meaning it will allow patients to give permission for their record to be shared with health and social care professionals that they encounter. Work such as this will surely enhance patient safety and integration of care and is to be commended.  Importantly patients have control over who gets to see the record. Although, nothing is perfect and a vital component remains missing: valuable as CCR is, it still does not allow patients to see what is in their record.

Patient access seems to be a very sensitive area for GPs in particular and I have encountered a number of patients in my area who had been given a rather hostile response when they have raised questions about access to their own records.  Best evidence from around the world is that giving patients access to their record helps rectify any errors and omissions and has reduced litigation in the USA.  From next April GPs will be mandated to allow patients to make and change appointments online and be able to order repeat prescriptions, but patients will have to wait a further year to have a mandate to get electronic access their record. Until then it is possible to request a paper copy for a fee.  I feel sure that patient access will be the critical factor that increases data quality over time.

Learning from the USA, one excellent information sharing tool is project blue button.  Using this patients can download their medical record from one provider (both in electronic and PDF formats) and share this with their new team.  If you like apps, take a look at iBlueButton from humetrix.com. NHS England has signed a memorandum of understanding with their US equivalent, the Department of Health and Human Services, and project blue button is a high priority.  If your local Health trust is buying a new electronic health record system soon, be sure to ask if it is blue button ready!

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At the U.K.’s national health Informatics conference #HC2014 last week, I found it surprising that personal health records did not feature.  It made me reflect on whether there is much of a demand out there from patients.  My organisation is looking at two options- one called Health Fabric (HF) and another called Patients Know Best (PKB).  Looking at how HF and PKB have been used so far in the UK it seems telling to me that most often their use is by carers (especially useful in the context of dementia) and parents (most PKB use is in super specialist paediatric settings)… So much for the patient knowing best… !  PKB does appear to have some really useful core functions like secured email between patient and their medical team, plus integration of video teleconferencing such as Skype.  However, it doesn’t come cheap, and tracking down evidence that it gives a return on investment (a critical factor for securing tech funding support from NHS England) plus is useful in mainstream long-term conditions such as diabetes, has proved impossible so far.

Meanwhile other local organisations have created a web-based portals to allow records access and sharing.  Sadly I have yet to meet a patient who has actually used these, I’d love to know about their experiences with portals.  If you use portals, please contact me, I’d love to hear your views.

Why do patients appear lukewarm about records access?  Perhaps they believe it will not actually help much, firstly since it’s often regarded as view-only and secondly with the belief (correctly) that most of the content appears to be jargon hieroglyphics.  Without their own version of the Rosetta Stone the record will be of little value. Maybe we need Google translate for healthcare-professional-speak?  Others may feel ill-prepared and scared of Technology, so it was truly amazing to hear at #HC2014 that through NHS England’s ongoing #ActivateDigital project 50,000 people have been trained to use Digital Healthcare.  Now that is a project I want to support!

Attitudes are changing – Health Informatics professionals realise that marketing health records as a tool-set which allows transactions (send and receive messages, make and change appointments, give feedback and rate services etc.) is likely to make this much more appealing to the public and I believe it will be a Gamechanger.

Talking of connected health, joining in with the diabetes online community this week has given me some revealing insights into the thoughts, fears and experiences of the people that I serve in my professional life. People in fact, just like me.  This has felt like discovering rare and precious pearls, so thank you DTweeps!  I think I last felt like this when I first became a DAFNE doctor eight years ago and the realities of type 1 diabetes each day were revealed to me.

This Tuesday’s local diabetes support group meeting overlapped with the weekly #ourD twitter chat, so I took the opportunity to ask group members about their attitudes to Twitter use and whether they would be willing to give it a try?  Whilst usage seemed low, I was impressed that many were willing to have a go, surprisingly age did not seem to be a barrier to enthusiasm!  Thursday night we have a pump evening, another opportunity to crowd-source concerning social media.  I am so grateful to Kev @OceanTragic who has shares with me his wonderful information leaflet entitled How social media can help people with type 1 diabetes.

Best evidence tells us that connected health helps build closer patient-physician relationships. Both say that by using the tools of digital healthcare they come to know each other better.  Reflecting on this as I look out at the buds and blossom, I say to myself what a wonderful world.

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Pete

First go, fair go! Social media in the medical workplace

People who read blogs are likely to enjoy a healthy slice of Tech; if you are ‘techy’ it follows that  like me, you’re also likely to be a fan of ‘The Matrix’ franchise. So, picture it…

Neo’s eyes flicker open as he stirs amongst the debris.  As he rises to his feet Morpheus mutters the immortal movie-line “He is beginning to believe”.

Until a few months ago I was somewhat social media naive. Okay, I enjoyed posting a cycling-selfie  on Facebook and speculating on the rugby fortunes of Wales and the B&I Lions on Twitter as much as the next bloke, but it played virtually no part in my working life.  Not that I hadn’t tried.  I lead a Trust group called ‘Emerging technology and workforce development’ and suggested we exchange links and ideas by Twitter.  BUT, No-one was admitting to using Twitter for work related issues, nor indeed other types of social media.  Maybe I generously interpreted my colleague’s stance as an attempt to maintain healthy blue-water between work and home life. My social media use continued to flat-line…

I am in a very different place now.  I can’t quite recall when my attitude and usage began to change, but the effect has been quite something.  I still have my twitter account for the rugby and  selfies, see @brum_taffy **grusome alert**, but I primarily use my professional identify @swelldiabetes now and I use it for so much more than I ever imagined.  Here is a flavour…

-I joined in with #NHSHackday in Cardiff as part of a group which developed software tracking eye movements, allowing measurement of visual acuity in kids and people with learning disability. It’s made me aspire to become a doctor who codes http://blogs.cardiff.ac.uk/development/2014/01/26/nhs-hack-day/

-I felt really involved with #NHSChangeday locally tweeting pictures of our Trust champions and more widely praising the sterling effort across the UK, encouraging many other people to pledge http://changeday.nhs.uk/list/search:b18

-Social media has become my favourite tool for my professional development: it won’t be too long until it becomes an integral part of professionals’ portfolio IMO

-Thanks to @ninjabetic1 I now recommend social media as a place to get help and support to the patients that I serve with diabetes and other long-term conditions: ‘prescribing’ social media, in its widest sense http://ninjabetic1.blogspot.co.uk/2014/03/the-diabetes-online-community-and-our.html

-it gives me a strong sense of collegiality, connectedness and #CuttingEdgeNess I cannot get elsewhere

So, an enormous thank you to Anne & Anne-Marie for getting me on the blogging path.

IMG_6530 #NHSHackday Cardiff iCards Team

IMG_6501 Team Planning

My journey to get to #Blog1 has been a lot of fun.  I’m so glad I have made it. Thanks to the #SoMe community for bringing me with them.

I’m beginning to believe”

Pete