What was said in webchat on use of information in health and care

You can now read the replay of our webchat with Professor David Haslam and Jeremy Taylor, the NHS Future Forum leads on the use of information to improve health and care.

David is National Clinical Adviser to the Care Quality Commission, an expert member of the National Quality Board and chair of their Quality Information Committee. Jeremy is chief executive of National Voices, the national coalition of health and social care charities.

The Future Forum has been asking for views on several aspects of information, including:

  • How can information be improved for users of service and 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 while protecting patient confidentiality?
  • How can we open up access to information and support people to use it?
  • How would you like to see data used to improve the quality of NHS services?
  • What are the benefits of giving patients access to their health care records in primary care?
  • How can cultural and behavioural change be fostered to stimulate collection and use of data among all professionals?
In Conversations, News, NHS Future Forum | Tagged , , , ,

6 Responses to What was said in webchat on use of information in health and care

  1. I work at a Local Involvement Network (LINk) soon to become local HealthWatch with responsibility for signposting patients and giving information about NHS services. Some questions –

    How will this fit in with Choose and Book between patient and GP?

    When will GP performance data be publicly available and will GPs be likely to share this with patients if it is negative?

    Will there be a statutory duty for NHS organisations and providers to publish annual complaints reports?

    What format will NHS information be in? Online only? Hard copy? and where? public libraries? GP surgeries? One-stop shops?

    Also when will the new Summary Hospital-level Mortality Indicator (SHMIs) be rolled out across England?

    Thank you in advance

  2. I have suffered Terribly from “Chronic Fatigue Syndrome” / Myalgic Encephalomyelitis for 25 Horrible Years and like other Sufferers feel like a decomposed corpse……………..
    200,000 other people suffer as I do in the UK………… Drat ! !
    I Hope the NHS Future Forum can use modern information & Methods of communication to Improve Our lot………
    98% of GP’s either Dont know or Dont care about us…………….
    Drat !!
    – Talk about FORGOTTEN…………… :(

    • Rod Whiteley says:

      If your GP doesn’t know or care about CFS, change your GP! Members of local support groups like yours usually know which local GPs are the most knowledgeable.

      There has been NICE clinical guidance on the treatment of CFS since 2007, and specialist centres for CFS are well established around the country. Here’s a list of them with contact details. The bad old days when CFS was a forgotten illness are long gone.

      I hope the NHS Future Forum supports ways to keep both professionals and the public better informed as treatments and services improve. The challenge is not just to make information available, it’s also to get across that health and care are always changing so that no one can ever assume things still are the way they once were.

  3. Anne says:

    It is really difficult to give clear and comprehensive answer or to raise questions that are effective but I have tried to include some useful comments based on the questions you have raised.

    ■ How can information be improved for users of service and professionals?

    It is important to recognise that local information about local services and local issues is just as important, if not more important, as condition specific and generic health information. This cannot be done in isolation or just by one organisation with a limited number of people. People have to live and work in localities and need to know how to make best use of local resources. Service user and carer led organisations are available and set up to support them. These will always be available and if the need for flexibility and variation is accepted a range of organisations will be available to support, signpost and inform local people.

    ■ How can we ensure information is available that enables people to take more control of their own care and enable shared decision-making?

    It is essential to treat people as the experts in their own care and conditions and to ensure they have all the information necessary to make informed choices. (This also includes carers where appropriate.) This means the individual being given expert advice and guidance but making the decisions themselves. It also means them owning the information about themselves and sharing appropriate information with those they wish to share it with. Most people can take that responsibility and would benefit from having choice and control.

    ■ How can we ensure that information supports improved care and better integration of services while protecting patient confidentiality?

    Most patients assume that information about them is shared between professionals working with them. Yet they often have to repeat their information over and over again – wasting their time and the time and resources of professionals. If the patient owned the information, they could share it appropriately with professionals working with them and agree confidentiality and role based access with those to whom they agree access.

    ■ How can we open up access to information and support people to use it?

    Decide on the best system and introduce it. The current system where everyone uses different systems which don’t talk to each other is costly and difficult to use. A simple local repository which can hold all the information locally would be cost effective and accessible if implemented properly. If it is owned by the patient, they could agree who could access it and share it. It should be hosted by an independent organisation or by an agreed consortium led by service users and carers so that it is recognised that it doesn’t belong to the organisation or the professional. A change in the law and clarity on data protection to enable rather than prevent effective, appropriate information sharing is essential. Patients should be able to see all information held about them unless it is confidential third party information or they are assessed as being unable to do because of their condition. This should be carefully undertaken and not be the decision of one professional alone

    ■ How would you like to see data used to improve the quality of NHS services?

    Genuine co-production is the only way to really change the culture and to make improvements. Very often it is the small, inexpensive things that can make an enormous difference – but it needs change in attitude and an acknowledgement that most people do not want to complain but are often frustrated by the perceived lack of understanding of why they feel they must.
    Complaints and constructive suggestions should be used to improve services.

    Data is part of the process and should not be an end in itself – if we mean no decision about us without us – all data about people should be available for them to see and only used for their benefit

    ■ What are the benefits of giving patients access to their health care records in primary care?

    The benefits are enormous – the patient will be able to ensure they are correct; professionals will have to record facts and figures not opinions and assumptions; being able to see, own and share their information will save time and resources in repeating information over and over and ensure the patient has choice and control and is at the heart of the decision making process. They will be able to see who views their information and why, who records information and how well is it used to ensure they are seen as a whole person and not just as a condition. It will also highlight the waste of time and resources in maintaining lots of different databases and information in lots of different ways in the same teams and organisations.

    ■ How can cultural and behavioural change be fostered to stimulate collection and use of data among all professionals?

    Co-production where patients and carers are at the heart of all levels of strategy, commissioning and decision making will ensure a balanced view and a co-produced result. This is more than ‘involvement’ as it requires all professionals to recognise the expertise of the individual and to ensure it is at the heart of all activity. It is essential that service user and carer led organisations are developed and sustained so that they can help to give better support to people to take part and to become more involved. This should be achieved independently of commissioners and provider organisations which have a vested interest in the outcome and a conflict of interest in the process. Independent support and training could ensure people locally are able to take a broad based view and not just be looking at their own individual needs.

  4. Fiona Rodden says:

    Thinking of the time it takes to implement IT innovations in healthcare we need to start planning for the things that don’t exist yet.

    The infrastructure night not support these things now, but by the time they do, the patients coming in to surgeries and hospitals will welcome them.

    The majority of NHS patients now don’t use information technology to communicate. But in twenty years the patient profile and expectations will be very different.

    Think about the average 30-40 year old who will be in the ‘patient’ demographic in 20 years. Most use smartphones all day everyday. They want communication by email or text, not by letter or phone. They care
    more about convenience and service quality than information governance.

    If we think about our customer profile and what they look for in a good service we can put together services or products they will want to use rather than just improving on what we have.

  5. Judy Aldred says:

    I have read the webchat with a great deal of interest especially as most of the contributors focussed on the ownership of patient records and the relationship between patient/clinician regarding the data. This interests me as it appears from this that access and ownership of patient records is important to patients yet when you look at the Healthspace project (which allowed patients access to their records) the uptake was so small the project was discontinued.
    I suspect it was a case of the right project at the wrong time. The current users of NHS services are in the main not interested but in 20-40 years time most of the users on NHS will be expecting full, secure, controlled access not only be themselves but anyone else they nominate.
    My own area of interest is around the use of NHS data to improve services and to use the available budgets more wisely. I believe the only way to analyse outcomes and spending to improve services/spending is by linking the data on a much wider scale than it currently is.
    Over the last 10 years the collection of data by government organisations has been growing and there is an enormous amount of data now around not just in the health domain but in many other contributing areas such as welfare, living conditions, deprivation, education etc.
    Linking this data together to get a more comprehensive picture of the past, present and future will allow much better planning of future services.
    The current government’s agenda’s covering open data and data transparency are helping this vision enormously as many innovative SMEs such as ours (SSentif) are already delivering these kinds of analysis tools.