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.
Saturday, 27 December 2014
Monday, 24 November 2014
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.
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.
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