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.