Your views: Information

How can information be made to improve health, care and wellbeing?

We are interested in your views in this area, including:

  • How can cultural and behavioural change be fostered to stimulate collection and use of data among all professionals?
  • How can we ensure information is available that enables people to take more control of their own care and enable shared decision-making?
  • How can we ensure that information supports improved care and better integration of services (for example, commissioning, research, clinical audit, public health) whilst protecting patient confidentiality?
  • How can we open up access to information and support people to use it?

The NHS Future Forum’s work on information is led by Professor David Haslam and Jeremy Taylor.

In NHS Future Forum | Tagged

12 Responses to Your views: Information

  1. mohammad.rafiq says:

    Information about facts is fundamental to all human activities. Distorted information leads to misleading facts. Misleading facts lead to decisions that are meant for purposes other than the real objectives set for various stakeholders in the health and social care.
    Most fundamental facts are generated out of meetings between all key stakeholder, these facts are recorded in minutes which then become the foundation for next decisions and meetings and more minutes and so on.
    In my 15 years experience of managing our practice, starting from scratch to a list 10,000 patients, I can say with 100% confidence that the problems of ou national health service lies in the information, due to this being distorted and every decision based upon this is inevitably distorted.
    From day one when practices decided to work together, baseless information is put in the minutes, the next meeting if you object as to the accuracy of the minutes, your name is marked with a circle in red ink. you are then treated as a ‘black sheep’, ‘whistleblower’, others start shunning you for fear or their own vested interests such as membership of the board. The consortium is increasingly seen as established especially when the existing PCT gives a lift to the rulers of the consortium, a cosy relationship is established between the old PCT and the newely established (consortium).
    By now the board in dysfunctional, the council is dysfunctional, both are used to promote and propagate information/minutes prepared by an ‘invisible board’; if any one objects to the wording of the minutes in subsequent meetings he/she is sactioned in various ways, deamonisation, invisible threats, shunning, leading to fear of being thrown out of the consortium.
    The above are the perfect ingredients of ‘ birth of a mafia’.
    The health and social care bill is doing away with PCTs,


    The only difference being, that in PCTs the bureucrats are above the GPs, in coordination with certain GPs. In consortium the ‘certain GPs’ are above the bureucrats and the liaison is just as close as is as part of the outgoing PCTS. Grafter practices will continue to remain under fear from their masters under the incoming regimes as bad as from the old regimes.
    you need to cleanse thoroughly the decision making mechanisms, minute taking process ought to be perfect so that these reflect facts and not the raw materials for foul decisions.
    Grafters will always work and deliver, the rulers undermine them for their own advantages, thereby taking incentives, real incentives away from grafters.
    Information is the key, minutes taking must be clean and factual, otherwise by the time the commissioning board is established they would be treating the information/minutes accumulated by then as facts; these so called facts then become the infrastructure/skeleton for the commissioning board, any decision by the commissioning board will be as good as the skeleton.
    Information is the tool to success, please make sure it is not dented, otherwise the new health and social care bill will lead to another bill in few years time and the health of the nation no better. Currently there is hardly any relationship between what the guidlines are saying and what is happening on the ground, mostly due to manipulation of minutes justifying deceits and manipulations.
    In my opinion any new regulation or reform is made successful or fails by the local response to them; if local organisations/stakeholders decide to protect few vested interests the real objectives will never be achieved; under these circumstances it is not the regulations that are faulty, its implimentation is aborted or undermined by distortion of real and relevant facts.

    So please, people at the top, keep in touch with the ground realities, get the data right, information right and minutes right. Assume that mafiaisation of health service is a relatively more of a real possibility that not.
    Results will take care of themselves, grafters are far more that manipulators, develop systems to weed out and make grafting pay for the grafters to prosper leading to cultural and behavioural changes that the health services needs and deserves

    • John Gould says:

      I was once told by a health health professional : “He who writes the minutes rules the world”

  2. claudette says:

    Invest in a multimedia project to increase awareness of available information and education on health, disease,illness and social care.

    Create an interesting, interactive website. Make it multilingual and multicultural. Have health and social care activities on it. Link it to NHS Direct and other existing health and social care sites. In addition have a television show the also reflects the health and social care agenda. In addition create leaflets and posters to reflect the other media’s health and social care agenda and post them in all health and social care establishments, on tubes and bus’s. Link this into an education programme at schools, colleges and universities. Make Health and social care come alive, make it interesting, relevant and appropriate to all communities. Make people want to engage with it by increasing their understanding in order for them to want to engage and contribute to it.

    This will give a powerful message that health and social care is everybody’s business and is a key part of the big society idea.

    • Hannah says:

      Health should be every ones business. Therefore continued partnership with organisations “competing” for our target audience’s attention should be sign posting the public to NHS resources available from a national level.

      NHS Choices website has so much to offer but it is not marketed well enough. As a one stop shop it is really useful. However, it should not get complacent and should continuously be improving itself like Facebook has done. The customers should always be at the heart of decision making.

      We must not forget that lots of people still don’t have internet access so it is important that these populations have access to all the information they require from different sources (e.g. Healthy Living Pharmacies, Health Trainers).

  3. Hannah says:

    The private sector has been the experts for years at giving the public all the information they need in order for the public to uptake their products which in some cases has been detrimental to thier health and wellbeing. For this reason it is important that health professionals and policy makers continue to use a social marketing framework in order for us to take the best practice from commercial marketers and apply it to best practice within social policy and social science for the purpose of social good.

    It is important to remember that health inequalities are a social injustice and therefore we can use social marketing to make sure we can help identify and reduce the inequalities that result in these different outcomes for different populations. Social marketing needs to be inbedded across all levels of decision making to support evidenced based practice or/and innovation and not just be seen and a tool for communications.

    The MINDSPACE framework is a really useful tool to inform how we can develop policies to improve health, care and wellbeing. It also helps us reduce the risk of reinforcing unhealthy behaviours unintentionally.

    Health Professionals and policy makers should continue to evaluate processes and outcomes to reduce unnecessary “reinventions of the wheels” but instead can make improvements and necessary changes for national or local needs. The use of evaluation frameworks to identify owners are key.

  4. Paul says:

    on point 1 – data collection is not the main problem in the NHS in my experience, we have a lot of data. For that data to be used it needs to be of good quality, made easily available and for users to have the skills to interpret it, either alone or with the assistance of informatics professionals. Behavioural change no. 1 then is that organisations need to be held to account on the quality of their data. This is key – you wont develop an information culture in an organisation until the often heard cry of ‘the data’s rubbish’ is disproven. Once people have confidence in the data then resistance to using it will reduce, then it is about the skills needed to interpet the data, both within traditional Informatics environments, but also spreading these skills to all areas of the organisation. Dissemination is important, eg a good dynamic online way of sharing information and data that people understand and can interrogate. The information should be role specific so people can see easily what’s key to them. Also decisions and changes need to be backed by information – so boards etc need to insist on robust information in business cases etc for example.

    Only with good quality and complete data will EPR etc become a real reality and allow for sharing of patient records electronically with patients.

    DQ therefore has to go way up the agenda if the Information Revolution approach is going to work

    on points 2 and 4 – not withstanding that a lot of NHS users are elderly and wont be online, the internet is clearly the way forward in terms of making information available to patients more readily. In short term special consideration needs to be given to elderly etc but over a fairly short period 95% of the population are going to be internet literate. I dont think they will need too much technical support to use it, if it is presented in the correct way. Confidentiality is an issue clearly, but that can be managed too in the same way the internet does now with credit cards etc – but it must be secure and not open to hacking. Again however if the data appears to be wrong, patients deny they have had a particular operation etc, there will be potential for a major crisis of confidence in the programme, you can imagine the 24 hour media response, something to fill more than a few hours of rolling news

    on point 3 – information to support improved care perhaps is around using it to provide/support evidence for clinicians etc, and providing benchmarking of performance. These data are open to all sorts of interpretation. as is mortality data and lots of other often proxy outcome measures. Extending the measurement of patient satisfaction has to be worth looking at, but you have to be able to tie back the scores to particular elements of the care pathway.

    On commissioning in particular I dont think that best practice tariff has been a great success in terms of improving outcomes, and the whole commissioning currency is extremely complex, people who understand PbR at all are at a premium in the NHS. So far commissioning has not proven to be a very good lever for managing change in the NHS, the approach needs to be looked at again, does integrating services in fact in reality require a more centralised approach and cant be done by a pseudo market and competing GP clusters etc?

  5. Reti says:

    To enable people to exercise control over their own care this needs to have been the ‘norm’ from a very early age. For example, where children are not given the opportunity to exercise (play) at school – due to both or either of lack of green space or school/govt policies – their choice to build healthy physical activity habits is cruelly diminished. If they haven’t built healthy exercise habits before they leave school there’s little chance of them developing them later in life. Because doctors are assumed to be the experts and ‘medicine’ is the norm for every minor discomfort there is also no longer knowledge about basic health care and sickness prevention within families. Power over their health care has been taken from people by the NHS and it needs to be redistributed. This will take time but a good start would be teaching it in schools and at Sure Starts.

  6. Mrs Valerie Egan says:

    I have looked at the slide pack and I would say this had been generated by kids, as it looks awful and tghe background colour is not right.

    A recent report dated June 2011 has stated the lack of neurology services across the country. This is my main area, and I have highlighted this to my Trust as it is an issue which you do not apppear to see as a crisis but to have 1 neurologist to every 125,000 is an absolute disgrace, where Europe is 1 to every 40,000.

    A framework came out back in 2005 for neurological long term conditions, and following this report I feel that it has got worse rather than better. Get your priorities straight, more needs to go into these services especially with the aging population.

  7. Phil Jones says:

    In brief – if you want to get the biggest impact you should use social networks such as twitter or facebook either by creating health info apps or updates which capitalise on topical subjects or introduce an element of fun. These are the kind of things that people tweet about or re-post to their friends and thus help to spread the information.

  8. Alex says:

    Information is particularly lacking in the area of Mental Health. In fact, this is a problem in the private sector as well as the NHS. NHS mental health provision is limited, so this is an area where a large private market has developed. But it has huge problems.

    In an ordinary area, such as plumbing or car repair, good providers acquire a good reputation, and poor ones acquire a poor reputation. Not only that, but customers will go to one who has a good reputation for a particular job, thus allowing providers too specialise, and by experience, become even better at that specialism.

    Now consider the problem of finding a private psychotherapist or psychologist. Firstly, no-one talks about their mental health, so there is no way of finding out which ones are good or bad, and worse, the private providers cannot specialise. You can see that the websites of organisations such as BABCP allow professionals to list areas ‘of interest’, but the provider which lists only one will lose customer flow to those list many. Only by reputation can a provider acquire a customer base in a specialised area. Thus, lack of information prevents the market mechanism from working.

    I don’t know how to solve this problem, although it seems clear that GPs would be in the best position to collect information on private providers. There needs to be some kind of (anonymised?) database of private treatment outcomes.

  9. Elaine says:

    Cultural and behavioural change can be achieved when you show it works! Model from the top – data should be obviously/explicitly used in setting plans and strategies; targets should be linked to changes in the data set used. These can be linked to individual service and staff targets so there is interest and ownership of the data. Be prepared to challenge poor data – it must be high quality or you may as well not bother; Be prepared to change the way you do things if the data suggests a different route – it must have an impact or it’s useless. You cannot ignore robust data just because you disagree with it!

    Often a lot of data is already collected, but poorly used – this makes people (rightly) reluctant to collect any more. Start with what you have and show how it can be used to inform service delivery. The use of data has to be meaningful, up to date and used as a basis for deciding what is working well and what needs to change.

    You can then celebrate / value those who make good use of data – publicise it. Where a service is successfully collecting and using data they will have ‘results’ to show for it, which will be more robust than anecdotal evidence. Work with these people to model and share good practice.

    With regards to access to information, it will depend on the client group that you are targeting as to what works best. Online information (that is simple to search and navigate) is useful, but many high priority groups do not have access or are not confident using this route. A multi-faceted approach is crucial, which includes paper based information.

    Information should be in language that is easy to understand. The plain English campaign is useful benchmark – keep it clear and simple, use pictures, diagrams and other devices to highlight key messages. Promote consistency between services, ensure everyone describes the same service in the same way. If you want to empower individual’s in their choice of care, be as impartial as possible and lay out the benefits / downsides of different courses of action. Make it clear who to talk to for further advice if they are not sure what is best for them.

    Partnership working can make a substantial difference to access to information and understanding of it. All LA’s have a Family Information Service, which supports families to access information and services, including health services. These should be a key partner in disseminating information, and usually have links with a large number of other potential partners. Other key partners may include children’s centres, LA adult services, voluntary sector organisations, parenting services – all can be ‘messengers’ who reinforce key information and support individuals to understand it.

    Make information available for other professionals as well as for patients directly. And if someone else is already providing high quality information, don’t duplicate it, work with them to share it more widely. As much as possible, work on the basis of one source, many routes to it.

  10. Maurice Harrington says:

    Patients having access to their medical records is an excellent idea which will improve the involvement and empowerment of patients in their medical care. This is particularly important in the care of chronic conditions. At the moment it can be difficult to get access to your own records and requires the permission of your GP. This is a strange situation, as the data is on your own health and you will have contributed to the funding of the service via taxation. Clearly an outdated approach which needs to be change. Increased use of the internet will allow much more efficient communication with health professionals which will be more conveniant. It would also possible to use programmed expert systems to assist in the management of care – once validated by clinical trials of course. There is the potential of new technologies in clinical testing at home which could provide assistance in survellance and monitoring of health.