Sunday, 22 June 2014

Diabetes in Parliament

How the #ParliChat tweetchat came about

Earlier this year I was asked if I would be involved with a small (but growing!) group of people talking with the Parliament Outreach team about the use of social media. Since then I have attended a number of #ParliTeaCamp meetings at Portcullis House discussing a wide range of topics and, if you follow me on Twitter, I'm sure you would have seen a few tweets from me whilst attending these meetings!
These meetings have been extremely interesting and rewarding. By getting involved I've personally learnt a lot about Parliament, social media and how communities work and grow and I hope my own contributions have been useful to others too. Through this involvement I have also had the opportunity to meet some amazing people who do amazing work!

So, when the Parliament Outreach team asked if I'd be interested in Our Diabetes doing the a live tweetchat, using the "Melbourne Declaration on Diabetes" debate at Westminster Hall, I jumped at the chance.

What actually happened

Being the first to attempt something like this envitably means you hit a few barriers. We successfully managed to negotiate them with the help of the Outreach team and run the first live #ParliChat tweetchat during the debate.

The initial idea was to tweet directly from within the debating hall but unfortunately security at Parliament put the first roadblock in our way... members of the public aren't (currently) allowed to take electronic devices in the debating chamber!

Hopefully this policy will change in the future. I feel it's a great way to get people involved in (and understand) the workings of Parliament, sharing with a wider community what is being discussed there directly with the people it relates to. When filtered through mainstream media most of what Parliament does seems to gets lost...
...After all, how many people saw anything in the media about this debate? I didn't see anything mentioned and yet around 3.2 million people in the UK would have a direct interest (having either type 1 or type 2) in this debate!

Plan B involved watching the debate via a Parliament TV live stream and this worked for most, but a few people had problems accessing the stream. I'm sure lessons will be learnt from this and any issues identified will be resolved in time for future chats... and I certainly hope future chats take place.

If you missed the debate yourself, it is possible to watch a recording of the proceedings both on the Parliament website and on YouTube. You can also read the transcript (courtesy of Hansard).

In preparation for the Tuesday #ourD tweetchat I thought it would be interesting to take the Hansard transcript and create a word cloud to highlight the most common words used during the debate. I found it very heartening that after the word diabetes the most common word was people - after all this condition is all about people!

The debate as a word cloud - click to enlarge

Who got involved in #ParliChat

Given the time of day, I wasn't sure how much engagement we would get during the debate itself, but I was pleasantly surprised to see the number of people joining rise as the debate continued: from diabetes consultants and diabetic specialist nurses to patients with diabetes and parents of those with diabetes; from Cardiff and Vale UHB (who are one of the largest NHS organisations in Wales - a pleasant surprise given health is a devolved power!) to JDRF UK (the largest type 1 diabetes charity in the UK); to diabetes device manufacturers and everything inbetween. We also had Jamie Reed MP (Shadow Health Minister) and Adrain Sanders MP (who moved the debate) engage in the chat.

In total 55 people got involved, creating 315 tweets reaching an estimated audience of nearly 375,000 people and approaching one million impacts on Twitter timelines. A fuller breakdown of these analytics can be found in this pdf document.

What did I take away from the debate?

Overall I came away with a much greater understanding of how many MPs are "blessed" (as Jamie Reed MP put it) by diabetes who have a real passion and commitment to tackling the issues around diabetes as well as how much work goes unnoticed by the public.

I wouldn't consider myself a political animal and I certainly wouldn't want this blog to become one, but I do have to confess I was somewhat disappointed by the response from the government given by Jane Ellison (The Parliamentary Under-Secretary of State for Health) and I felt those in the debating chamber felt this way too as she gave way several times to MPs.

I will finish this blog by listing a few of the points raised that struck a cord with me. I would be interested to know what parts of the debate struck a cord with you by joining me on Tuesday 24th at 8pm BST in the #ourD tweetchat and/or by adding your comments at the bottom of this blog.

1. Statistics were discussed throughout the debate

  • Diabetes caused 5.1 million deaths in 2013 or to put it another way, "every six seconds a person dies from diabetes somewhere in the world".
  • Our annual intake of sugar is 33.7 kg per capita. To put that in perspective, it is equivalent to eating nearly 34 average-sized bags of sugar each year.
  • Up to 80% of type 2 diabetes could be delayed or prevented.
  • In the UK this year, 59,000 people will die unnecessarily from diabetes.

2. Many in the debate asked for a UK wide strategy

Jamie Reed: Diabetes UK [...] endorses the view that there is a clear need for a national action plan. It has identified five key areas that must be included. Those are: improvement in support for self-management; integration of care; improving safety; a focus on children and young people with diabetes; and prevention of type 2 diabetes. I am sure that if the Government introduced a comprehensive action plan built on those five principles, it would receive the support of the entire House.

The Parliamentary Under-Secretary of State for Health (Jane Ellison):
I accept that there is a challenge about the need for a national action plan.
[...] Nevertheless, I currently have no plan for a UK-wide strategy because health is a devolved matter.

Jim Shannon:[...] but we had a UK-wide strategy until 2013—last year—so we have shown that we can work together. All I am asking really is: why we do not initiate a similar plan to what was there before 2013—a 10-year plan that started in 2003—and have the four regions work together? That is exactly what the Melbourne initiative is about, and we could do it because we have done it before.

3. Education was also a strong theme (and one I have strong views on too!)

Jim Shannon: Only one in 10 people who are newly diagnosed with diabetes are offered education on how to manage their condition, despite strong evidence that education is a cost-effective way of giving people the knowledge that they need to manage their condition. On managing diabetes, after someone is diagnosed as diabetic, what help is given to them to ensure that they manage that in a sensible way?

Mr Sanders: The point about education is interesting. According to the National Audit Office, the estimated amount that the NHS could save annually through people better understanding and managing diabetes is £170 million. That is just from improved awareness and education.

Jamie Reed: There is an issue with not just numeracy, but literacy, and there are also issues about social exclusion, which I am sure we are all aware of. We need to put some time and effort into understanding and resolving those issues if we are properly to increase self-management among diabetics.

4. Use of Data

Jamie Reed shared a vision of the future that I'm not sure is a "utopian world", but smarter use of data certainly has it's place. Ownership of data and privacy concerns will be important issues to resolve and a public dialogue needs to begin before this takes place.

Jamie Reed: "... the most important issue in managing my condition is having access to data about it, such as my blood glucose readings and my insulin ratios. We need a framework and a strategy for medical innovation that incorporates diabetes research—from not just a scientific point of view, but a patient’s point of view—in a profound way. How can we become the best country in the world, in terms of medical companies and other pharma-based industries developing new and innovative ways of treating diabetes?
I look forward to the day when my data can be captured in real time and shared with my GP and my pharmacist, so that I do not have to phone up, text or e-mail to get my insulin prescription. My GP and my pharmacist will have the information and the algorithm, they will know when my prescription needs to be ready and how much I am using, and my doctor will know how I manage my condition. We can hothouse innovation—my office and I are doing an awful lot of work on this—but we need to make that innovation part of not only a national diabetes strategy, but a biotech and medical innovation strategy."

5. Patient Empowerment

Jane Ellison: People cannot be empowered without information.

Jane Ellison: I want to discuss another area in which we can make a difference by empowering patients. Colleagues might be interested to hear about the patient experience of diabetes services survey, part of the national diabetes audit, in which I know there is always great interest in the House—we regularly answer a number of parliamentary questions about it. The survey measures the health care experiences of people with diabetes in England and Wales. It collects information online from people with diabetes by asking questions about their care using a short, validated questionnaire, and it is being tested.

Jane Ellison: Public Health England is developing a tool to drive improvements in diabetes care and iron out variation. It will be launched later this year, and although I am not able to give much detail now, I am sure that my hon. Friend the Member for Torbay will be interested when it is launched. It will provide a clear picture of how diabetes care and outcomes vary across the country and among practices, which will support decisions on how to make improvements.

Having had sight of this tool ahead of its launch I can only agree with Mr Sanders comment:
One of the challenges of a bottom-up approach, as has been highlighted in this debate, is getting people to use the information that is out there to drive up standards. People need to be aware of where the information is and how they can best use it, which is a challenge not only for diabetes but across the health service.
The tool visualises data that has already been published for some time. It is all very well showing patients how good or bad their care is, but if you don't tell those same people how they can effect change to improve their care then it doesn't empower patients at all!

Jane Ellison: That body [NHS England] is implementing what it calls a customer service platform to allow patients with diabetes to self-manage, through booking their own appointments, managing their prescriptions, monitoring the care they have received and being able to view their personal health records.

Clearly my view of self-management is very different to that of the Parliamentary Under-Secretary of State for Health! Being able to book appointments and order repeat prescriptions are useful tools, being able to view my health record would be wonderful - in theory all of these things COULD be delivered now (and some areas do provide all of these tools) but even if they were universally available it's nowhere near what I would consider required for self management!

6 Working together

Jamie Reed: It would, therefore, be a tremendous gesture—not for its own sake, but from the point of view of those living with this condition—if Members who understand type 1 and type 2 diabetes were allowed to contribute their knowledge and experience to the production of a better plan that would better suit those with this condition.

Jane Ellison: ...I encourage Members to tell us of effective local initiatives, so that we can spread the word.

7. The Melbourne Declaration

Since the declaration was signed, over 100 parliamentarians have signed up as members and many more have declared themselves supporters. Two newsletters have been published and are hosted on the International Diabetes Federation website, a Twitter account is now active.

Following the declaration and events in Parliaments around the world, the ExPAND Policy Toolkit for Diabetes has gone live and will greatly assist the aims of the declaration. It is a practical guide to help diabetes advocates to challenge national Governments and to raise the profile of diabetes.