More Reflections on Recent Events, Zen and the Art of Tim Management

I have been reflecting on how I might be able to apply the learning from the recent health improvement events that I have attended (see my last blog post).

Most obviously it has been useful for me to discuss ideas about how the UK health and social care system could be reformed.  This has been useful, mostly by reassuring me that others share similar views.  This is important for me as I am keen for the ideas and findings that emerge from my PhD to help influence real change and not to just be an acceptable academic viewpoint.  The later part of this post will give you an indication of my views about how our health system could be better. 

The contacts that I have met at recent events will be helpful for influencing change.  I am aware that even once I have gained a PhD, extent that I can influence alone will be minimal.  Given this, it is essential for me to continue to develop contacts with others with similar views to me on health / social care reform.  It will only be by working with others that I will be able to achieve significant change.

It occurred to me that the facilitation approaches of the Health and Social Care Integration Pit Stop 
and The Coalition for Collaborative Care partners meeting both included facilitation styles that are similar to those used for Action Research.  This will be a useful reference point as reflecting on the effectiveness of the approaches of the facilitators of these events may be very useful in informing the consultations that I carry out in my PhD.  It also occured to me that there was a philosophical link between co-production and Action Research.  Both are very much a collective approach to determining what should be. 

I have also reflected on a discussion with someone from Macmillan Cancer Support, at the Co4CC partners meeting.  Broadly speaking it appears that people with cancer fall into three categories.

1. People who have recently been diagnosed and are going through treatment or are about to 
2. People who completed initial treatments and are currently managing their health
3. People who are heading towards the end of their cancer journey where there is little chance of recovery 

From this conversation it appeared clear that a - the majority of people living with cancer are in this middle category and b- this is where the greatest cost savings would be.  Primarily these cost savings would be achieved by helping people in this middle category stay healthier for longer.  I have reflected on this discussion from a very personal perspective.  As I am someone in this middle category (I was diagnosed with non Hodgkin's lymphoma in 2000).  Perhaps I could help save the NHS money in the long term by getting better at managing my health now.  Given this perhaps I should focus my PhD on cost savings in the delivery of services for people with lymphoma,  as it appears that the greatest cost savings are likely to emerge from people like me getting better at managing their health. 

The next part of my thinking what else could I do to manage my health, what support would I find useful to help me do this more effectively?  Thoughts on self management take me back to reflections on reading Zen and the Art of Motorcycle Maintainance .  This books takes the metaphor of looking after a motorcycle to suggest the approach that we should take in looking after ourselves.  Rather than simply waiting for things to go wrong he becomes attuned to listening to signs that something is going wrong.  Clinks, and clunks all suggest that some fine tuning may be needed to get the motorcycle running smoothly.  Responding to these signs as soon as possible is of course the most effective way of ensuring a long life for the cycle and of avoiding breakdowns.

I am aware that I have much to learn about how to listen to the signs that something might be wrong in myself.  Like most people I am equally inept at knowing how to respond to signs when I do spot them.  This morning I awoke feeling distinctly feverish and unwell.  I occurred to me that these kinds of symptoms could be my body's way of telling me that something isn't quite right.  I am also aware that 'night sweats' can be a sign that my cancer could be recurring.  If I was really concerned I could arrange a check up with an oncologist.  It is however more likely that this is nothing to worry about and no need to bother an oncologist or even a GP on this occasion.  I am however mindful of the lessons from Zen and the Art of Motorcycle Maintenance.  Some fine tuning may be needed.  I am however in need of further training in how to get my body running smoothly again.   

Reflecting back to conversations about apps and monitoring devices at the Digital Catapult pit stop event I am thinking about what apps and devices I would find useful to help me stay healthy for longer.  I would like some form of biosensing wearable device or app that would help me monitor signs and symptoms in my body to give me an indication of when some fine tuning may be needed.  To accompany this I would also like some training to help teach me how to respond more effectively to the information that this device / or devices give me.  I would also like some training and guidance to help me to interpret the information that I see to know when I might need to re-visit a health professional and to engage in a more informed discussion when I do.  I would also like to make links with other patients who are also trying to manage their health.

If you are a tech developer working on a relevant device, or if you know of one that already exists do please contact me.  I would also love to hear from any experts in 'motorcycle maintenance' out there.

I should also perhaps add in relation to the comments mentioned earlier.  As far as I am aware I am currently in good health.  Their is no sign of the lymphoma coming back.  I just want to get better at making sure that it stays that way.  My aim in doing this is also to help others to do the same, and to help create cost savings in this area of the health system through this form of collective self management.  

Catapult to Collaborative Care

Over the last two weeks I have enjoyed 5 full days of stimulating conversations and talks, at three different events with a wide range of experts about how to make the UK health and care system work more effectively. 

This started with the Digital Catapults Health and Social Care Pit Stop.  A group of academics, commissioners, technology professionals, government and local government employees spent three days unpicking how to apply digital technology to create and efficient and effective solution to integrating health and social care.  Unsurprisingly for me there was a consensus that putting patients at the centre was part of the solution.  I am however rushing ahead.  As most of the first day was spent defining the problem.  Some of the ideas discussed are illustrated on the diagram below 

 Problems with the current system included ;

• Costs - including the costs of providing health and social care are escalating
• Efficiency / customer satisfaction - including service user frustration at frequently being asked to repeat the same information to multiple providers. 
• Quality - lack of joined up information makes the analysis of information to achieve the best commissioning, diagnosis and treatment decisions impossible

Some of the problems are also illustrated on the picture to the left.

Problems and solutions were also informed by presentations from a host of speakers including;

• Charlotte Buckley - Deputy Director of People, Communities and Local Government 
• Mark Golledge - Local Government Association. 
• Hannah Miller - Croydon Council’s former Executive Director for Adult Services, Health and Housing
• Lee Omar - Red Ninja,
• Chris Hutchins - HSCIC, 
• Inderjit Singh - NHS England

 I found it interesting to hear that service users often assume that their health and care providers have access to more information than they do to make decisions

Day two started to assess possible solutions to the problems.  At this stage we were however encouraged to stick with divergent thinking, to look at the bigger picture and to generate lots of ideas before narrowing down.

Day three was focussed on applying convergent thinking to take the ideas already discussed into creating more concrete solutions.

I found it interesting that there was a lot of  consensus.  There was universal agreement about the need to put service users at the centre of the system.  Letting patients and or their family who should access to their data was suggested many times.  Another frequent suggestion was the idea of a single dashboard that could access information from all of the different information technology platforms that currently exist.  It ocurred to me that it was important to be mindful of the difference between information systems and information technology systems.  To solve the problems, we might need to create a more effective information system.  This could include a dashboard as suggested.  To do this, in the short term at least it might not be desirable or even possible to change the information technology within it.

I presented the solution created by the group I was working with.  Our ideas included;

• a dashboard 
• an information system that would enable data analysis to inform more effective treatment and commissioning decisions
• the social prescribing of physical activity and related apps /measuring devises
•  and the use of robots as companions to reduce isolation.  This last suggestion was however an April fools joke (we'd been encouraged to include one)

 The following links provide some more detail about the event 

• http://www.slideshare.net/CDECatapult/personalisation-of-social-care-pit-stop
• https://www.youtube.com/watch?feature=player_detailpage&v=KBNZytGEGdc

Last week I was one of three members of the Coalition for Collaborative Care's (Co4CC) Co-production group to be invited to attend the full Co4CC partners meeting.  The partners meeting included attendees from Co4CC's partners.  These are all organisations with an interest in transforming health and care through patient empowerment.  The meeting included staff from NHS England, Macmillan, NESTA and the Royal College of General Practitioners.  For a full list of partners see http://coalitionforcollaborativecare.org.uk/aboutus/our-partners/

Speakers clarified the aims of Co4CC.  This is focussed on putting the house of care model (illustrated below) into practice.  It has been piloted through NESTA's People Powered Health project.  More than medicine is one of the key elements to this.  As looking towards an approach based on much wider health objectives is needed to address financial issues and to provide effective care.

I found it interesting to hear that the Royal College of General Practitioners had been centrally involved in setting up Co4CC.  Their motivation was to help create an environment where doctors can continue to provide excellent care for patients.

There was discussion about how to put ideas into practice.  Building on existing good practice was  suggested to avoid reinventing the wheel.  Using the house of care as a model was generally agreed.  it was also however suggested that there also needed to be flexibility to allow for difference at local levels as different areas have different problems and differences in their structures.  One of my suggestions was that it is necessary to integrate health and care whilst engaging with the complex messiness of the system

I found it inspiring to see that there was so much commitment to the idea of patient empowerment.  It was however also emphasised that our work here is not yet done.  It does however feel like a privilege to be part of something that has the potential to influence positive change at a very high level. 

The next day I attended my first Co4CC co-production group meeting.  It was good to meet other group members.  It was good to see that the group includes a lot of different expertise from across the UK.  It was also good to see how the group was going to get involved in real initiatives and not simply just talking about ideas. 

Truth, Epistimology and Ontology

Something that I had noticed since I started my PhD is that they are doctorates of philosophy for a reason.  Although only recently grasped exactly why.  At all levels of education up to this point work is assessed on somebody else's criteria.  In a PhD you must establish the criteria by which you want your PhD to be assessed on.  It is therefore essential to establish its internal logic and ensure that all of the study is consistent to this.

Defining truth and attitude towards gaining knowledge is a fundamental aspect of the internal logic of a PhD.  For example if you take a positivist, scientific approach your attitude to knowledge gathering is that you are an impartial observer.  In a social science context this would mean that questionnaires would need to be designed carefully so as not to influence the participants of a survey.  It is as if the researcher is looking into activity taking place within a goldfish bowl conducting experiments to find out what is happening in there taking care not to disrupt or influence anything taking place in there.

I have decided not to take a positivist approach.  This is for many different reasons.  I am investigating potential cost savings and efficiency improvements within part of the health and social care system.  At first glance a positivist approach might seem appropriate as this is primarily concerned with assessing the potential financial impact of new approaches.  However because I am looking at this from a systems thinking perspective this would be problematic.  To estimate the potential impact of a new approach it is necessary to create a model.  Taking a whole systems approach there is an inevitable amount of complexity due to the interconnected nature of everything.  This would make modelling from a positivist approach challenging as from this perspective this model would claim to closely resemble real life systems.  This would be a huge complex undertaking  beyond the scale and scope of a PhD project.  In response to this I could decide to do a cost effectiveness study on one part of the system and ignore the wider system implications.  However my perspective is that finding cost savings in one part of the system is almost pointless as this may simply transfer costs into a different part of the system.

A solution to the challenge of whole system modelling is not to take a positivist approach.  In this context models become conceptual rather than real.  This makes testing ideas within models much simpler as there is no claim that these models are accurate reflections of reality.  Within this my approach will be strongly influenced by Peter Checkland, Geoffrey Vickers  and other advocates of soft systems thinking who argue that human systems are different.  From this perspective within any form of social science research it is not possible for the researcher to impartially observe as the very process of their research activities will inevitably influence participants.  An illustration of this is the Hawthorne effect where individuals improve an aspect of their behaviour in response to their awareness of being observed


A post positivist perspective on research is that rather than thinking of the observer as being outside of a goldfish bowl looking in is more like thinking of the researcher as being inside the goldfish bowl observing changes taking place around them.  From this perspective the researcher must accept that everything that they do will influence the subjects being observed.  From this perspective action research methodology is appropriate to gather data to inform models.  I will use action research approaches including soft systems methodology and appreciative enquiry within my study.

The stance taken towards epistemology and ontology  throws up many different questions including what methodologies are valid or appropriate.  There are also paradigm debates, with some authors suggestion that some methodologies are incompatible with some methodologies. 

Postmodernism is an approach that interests me.  It may include some relevance to assessing the current state of the NHS.  It also provides insights that appeal to my sense of humour.  I have however concluded that it too relativistic as the central philosophy for my study.  I have concluded that even if I accept that my epistemology is relative, to give my research meaning I must accept or at least assume that there is a reality, even if it may be impossible to fully understand or measure it.  For this reason I plan to focus my research from a critical realist perspective. 

These links provide additional insights into the importance of having a clear epistemology and ontology in a PhD

• http://doctoralstudy.blogspot.co.uk/2009/05/being-clear-about-methodology-ontology.html
• http://matt.might.net/articles/phd-school-in-pictures/
• https://www.youtube.com/watch?v=We760YM5-iM

In essence if you don't clearly set up the perspective of the research how can anyone effectively assess if it has been successfully carried out.  

Towards the next stage of my PhD and of Life

I'm currently working on jumping over my first hurdle since starting, completing an RF1.  This is essentially a revised proposal that focusses down my initial ideas and planned research approach into something that should be achievable.  This is now almost done , ready to submit first thing in the new year.

I have narrowed down my area of study to assess if systems thinking, patient empowerment, and information technology could be combined to create efficiency improvements and cost savings in the delivery of health and care services for people with colorectal (bowel) cancer in Sheffield.  The aim with this is not to examine the entirety of all three areas but instead to focus on the areas where they intersect.

Narrowing this down further a slightly political area has entered into my thinking.  I am focussing on specific types of patient empowerment.  Within my examination of the area outlined above, I am planning assessing the impact of the political and philosophical basis of the original structure of the NHS and some of the reforms that have been tried.  In essence in appears that the NHS emerged out of socialism at a time when faith in science and faith in experts was almost universally accepted.  Many of the reforms that have been introduced are in the direction of free market ideology, introducing market principles.  I plan to explore the potential of interventions based on an ideology that is different to both of these.  By focussing on patient and community empowerment interventions that connect to asset based and community development principles I plan to examine the potential of community involvement for community benefit. By this I mean community in its wider sense not necessarily geographical communities.  e.g. local, national and international communities of cancer patients will be relevant to this study. This appears to connect to the philosophical underpinning of the emergence of the internet.  Tim Berners-lee is an advocate of open data.  Initiatives such as Wikipedia engage voluntary input to contribute to common good, or at least an increase in common knowledge.

Life drama's continue to distract my focus.  My relationship with my partner who was about to move in with me appears to have come to an end.  Feelings of loss connected to dealing with the recent death of my uncle and sister's partner, combined with PhD stress may have helped fuel recent arguments.  The next steps seem a little more daunting without some of the support and stability that I thought was going to be there.

Visiting my parents house over Christmas I am surrounded by books.  There must be over a hundred that I would like to read, at least half of which are directly relevant to my PhD.  This reminds me of all the reading and other work that I need to do over the next few months and years.  Whilst it still feels exciting, at the moment it also feels like a challenge.  For the first time, although probably not the last doubts about whether I am actually going to be able to get to the end have started to emerge. 

The Future of Health

The Future of Health Event

Life, Death and The Wizard of Oz

 

A few weeks ago I found out about a health event that appeared directly in line with my PhD.  The  focus appeared to be about how to make the NHS better through greater patient empowerment.  Technology also seemed to be a key theme.  I have to go to this event I thought.  Then I spotted a Twitter post stating that they were looking for people who have or had lived through chronic illness to join a people's panel for the event.  Looks like that suits me perfectly I thought, so I applied to join the panel and was accepted, how exciting.  

The weeks leading up to the event were a little challenging for me emotionally however.  My uncle died a few weeks before the event, and less than a week before, my sisters long term partner had a heart attack and was dying in intensive care whilst I was at the event.  I'd known him for almost 20 years.  Whilst in some ways I guess serious illness and dying were not entirely alien themes to the event.  I have to also say that this was more than a slight distraction. 

The event started really well.  I met some other members of the People's Panel (PP) who seemed really nice.  The opening speakers were informative.  Ceinwen Giles gave a powerful speech using the wizard of Oz as a metaphor.  When she reached the end of the yellow brick road she realised that her consultant wasn't a wizard able to perform magic, just an ordinary man hiding behind a curtain. This was when she realised that she couldn't go back to Kansas.

I was also inspired by watching Anya De Longh politely but firmly holding Martin McShane from NHS England to account to ensure he stands by his commitments. She suggested that a co-production approach should have been used to organise the event, involving the expertise of patients in its planning not simply consulting and asking for their views.  By making this point she clearly hinted that this approach was needed throughout the NHS not simply in the organising of this event. 

It was reassuring to hear Simon Stevens CEO of the NHS talking in support of the asset based approach to health improvement.  Even if my more cynical side thought that he might just be tailoring his speech to his audience.  I also enjoyed the questions from PP members and other and the responses from Simon Stevens and Martin McShane.  It sounded as if the NHS might be in good hands.  I did however reflect on the fact that given the fragmented nature of current NHS structures, even if the leadership have the ideas and vision that is needed, getting people throughout the system to make the changes that are needed might be challenging.  One of the PP members stated that whilst there may be a lack of activated patients, creating more activated patients isn't going to get us anywhere unless we also have activated clinicians.

Alex Silverstein spoke eloquently about his own positive experiences of using apps to manage his health.  In response to the idea that some doctors are critical of patients accessing unreliable information on the internet, he stated that if medical practitioners don't like the information that they see on Wikkipedia they should change it.  Tim Kelsey opened his talk by stating that the future is here.  I wondered whether he was deliberately quoting William Gibson.  Following this he talked about the areas where the NHS has a lot of catching up to do.  It is the worlds largest consumer of fax machines and many records are still kept on paper.  Following a question from the floor there was some interesting discussion about how waiting rooms could be made more productive.  Computer tablets to engage patients and enable them to make better use of their time was discussed as was more use of remote Skype consultations to reduce the need for waiting rooms 

In response to a question about the potential for co-production to bring together experts including patients to create the apps that are needed to empower patients and health professionals I was disappointed that Tim Kelsey's response seemed to be that it would be better to simply leave it to the market.  Is this not  why the NHS is still the worlds biggest consumer of fax machines ? He also suggested that patients should learn to code and create their own apps.  I was also a little sceptical about this idea.  I am not convinced that this is the best way forward.

Next I went to a talk that was supposed to be about patient empowerment, but seemed more like a sales pitch to GP practices for some new software.

In a session on service integration David Haslam (NICE) suggested that one of the problems is that health and social care providers have a different understanding of what words such as urgent and impact mean.  Worse still, very often they don't know that they don't have a shared understanding.  He also suggested that NICE guidelines may help improve integration.  Luke O'Shea (NHS England) suggested that its not a zero sum game and by sharing power health professionals may end up with more power than they started with.

The event ended with an inspirational talk by Ben Goldacre.  It was good to see that he is as inspirational and entertaining in real life as on his TED Talks.  He talked about the potential for accessing data from the results of real treatments.  He also stated that doctors need to be more like life insurance salesmen, more focussed on giving patients options so that patients can make their own informed decisions.  I was also lucky enough to speak to Ben at the end of the event.  I asked him his thoughts on IBM's Watson.  He suggested that it was probably just smoke and mirrors.  If it really did what they claim, it would be used more extensively already.  Despite this, I still think that its likely that it will be predictive analytics combined with patient empowerment that will revolutionise healthcare.

Following the event I reflected on my own thoughts about how the UK health system could be improved.  Recent personal experiences flowed into my thinking.  The NHS is good at dealing with physical symptoms but less good at treating the whole person.  75% of NHS expenditure is now used to support and treat people with chronic health conditions.  More than 50% of people with chronic conditions have more than one of them.  A system based on experts with specialist knowledge of one condition is now no longer appropriate.   The current system is unsustainable.  Patients are a largely untapped resource that could be used to create a radically different, better and more efficient system.  Chronic conditions are not just physical, the psychological aspects of these need to be treated with the same parity as the physical.  A holistic, whole person approach is needed.  Drug, alcohol and mental health conditions also need to be regarded as chronic conditions and treated in the same holistic way. 

The Beginning - Title Flux

Title Flux

My initial proposal was to focus on ideas within smart cities literature that could help inform positive change in the NHS.  I liked the idea of smart cities texts as this area is very much forward looking, solution focussed rather than being restricted by the limitations of current structures.  This perspective in my opinion opens up the inspiration that might be needed to achieve level of radical change that is needed.  

After starting however, I found out that this was too broad and I would need to narrow down.  Talking to others who are, or have been on this journey, I understand that this is very common advice.  So I started to look for ways of narrowing my idea down to something specific enough for a PhD, whilst also remaining in line with my interests and motivation.  

Being a little cynical I had decided that the most effective ways of influencing positive change in the NHS was to focus on the money.  To look at efficiency and cost savings.  My original proposal had also included social impact assessment.  This last area started to dissolve as I started to focus more precisely.  

My ideas changed a few times, with different variations on titles and questions.  Apparently this is very normal at the beginning of a PhD Journey, and not uncommon in the middle.  

My current focus is to investigate the potential for patient empowerment with information technology to create cost savings and efficiencies in the journey of people with colorectal cancer in Sheffield.  This is not the type of cancer that I have or have had (the doctors are not entirely sure on this) but apparently this type generally responds better to lifestyle interventions than Lymphoma (which is the type I have had), even though I believe that lifestyle has been a key part of my own recovery.  

My plan is to focus on the colorectal pathway of a wider survivorship project taking place in the city and to use agent based modelling to help investigate what a more effective and efficient health system should look like.  I also plan to conduct an action research project or some appreciative enquiry consultations to help inform the model.  The real impact of the current survivorship project will also inform the model.  Smart Cities will remain a form of literature and will help inform the model, as will behaviour change and behavioural economics.  Systems thinking is another idea that I plan to bring into the design of the model as I believe that this type of service integration could create efficiencies and save money.  These will all combine to help create a model that will be informed by theory as well as changes that appear to be working/or have worked in practice. 

This may all still be too much or too broad so it may refine or evolve again sometime. 

Prequil - Why I started this journey and other feelings

Why I started this journey and other feelings 

 Doing something where I feel like I can make a difference has always been important to me.  Even back when I used to work as a circus artist, this was mostly about wanting to make people laugh and smile.  This may seem a little arrogant, but with life experience and work experience in health I have ideas about how to make the UK health system work better.  Prior to applying to do a PhD I had applied for some exciting roles where I thought I would be able to put some of my ideas into practice.  I was even interviewed for some of them, but didn't quite make it.  It seemed like something was missing.  whilst I was clearly getting close to getting a dream job where I could make a difference to the health system it seemed like I wasn't quite there yet.  

I started looking into applying for funding to do a PhD as a way of getting the credibility I needed.  This may seem like quite an extreme move, so I guess I better explain.  To start with I was not trying to get just any job.  My aim was, and still is to eventually to end up in a role where I have the credibility or seniority to be able to influence how the NHS, or at least part of it, is structured.  I had also noticed that a common theme in interviews for some of the most exciting roles, was questions about what papers I'd published if any.  Hmmn what could I do to gain credibility and find opportunities to publish papers.  

It also occurred to me that the health sector, is one with a lot of very well qualified people in it.  So I figured that if I am going to be taken seriously I better make sure I really know what I'm talking about.  After getting a distinction on a PG Cert I managed to secure employment at Sheffield Hallam University, in a role that included funding for a PhD.  I did have some feelings about being a little too old to be starting this journey (I still do), but everyone seemed to tell me that you are never too old to start a PhD.  So here goes.