An enabling environment to make a reality of active patients/citizens

Five ideas to make a reality of active patients/citizens

  1. Patient access to electronic GP records.
    Access to your patient record really changes the relationship between you and your doctor. It improves self-care, and increases the chances of you taking your medication properly. It helps patients understand their care better and therefore feel more confident. It’s safer because patients can share their record with whomever they want – consultants, carers, A+E in the USA if they fall ill. Patients should be able to add but not subtract. The system should include links that help them understand what they read. And they should be able to write co-designed care plans. The online record should become a portal to a wide range of personalised health supports that have yet to be written but would not be difficult to do. Feedback to NHS organisations, linking local public health campaigns with you personally, linking you with local 3rd sector groups, social health networking. And so on. Good info can be found at Record Access is available now at a GP near you. The government will make it mandatory for all practices from 2015, but until then the practice can refuse you access if they choose.
  2. Social action on health. Also known as community development.
    There is strong evidence that bringing people together in geographical areas (and probably via groups of interest as well, such as people with diabetes):

    1. protects health,
    2. empowers communities to change things for themselves with statutory agencies
    3. helps tackle health inequalities
    4. improves behaviour change
    5. probably saves money for a wide range of statutory agencies.

There are patchy examples of this work. Many make significant impacts on the NHS and on people’s lives, particularly when asset-based. It also naturally integrates services as people demand change at many different sectors at once. We need to find ways of making it far more likely that Clinical Commissioning Groups, Local Authorities and Health and Wellbeing  Boards commission this work.  Good examples

  1. A sea-change in self-care and shared decision-making.
    We know how to do this. There is lots of evidence for benefit. Patients want it, too. We need techniques to be available for clinicians and patients (record access, decision aids, care planning) but most importantly we need training for clinicians, particularly docs. If docs promote this way of working, it could transform care. Germany has begun on a systematic scale. We need medical students taught it, GP and hospital registrars. A big job for HEE.
  2. The NHS must see itself as responsive to its patients and citizens and populations.
    No longer the prima donnas but expert servants. NHS structures must become increasingly democratic. They need to see one of their prime roles as proactively seeking dialogue with their patients and populations with a view to incorporating their ideas and insights into daily planning and monitoring. We need a shift towards Health and Wellbeing  Boards as main commissioners because they have some democratic legitimacy and eventually move to LAs as commissioners. We need lay people (perhaps increasingly trained as patient leaders) in every section of the CCGs and HWBs.We now have evidence that listening and responding leads to safer more productive care. We need campaigns similar to the “Wash your hands” campaign that encourages and inspires patients to highlight safety and responsiveness. General practice must take part in this  it has been aloof for too long. Should we move to patient committees on practices. Other suggestions might include:
  • Lay people mandated on key committees. Maybe super Patient Participation Groups to become part of every CCG’s planning process.
  • Responsiveness monitored both by patients and by the Care Quality Commission. If inadequate, less money or no further authorisation or Foundation Trust status.
  • HWBs to sign off CCG plans
    5. Massive increase in online feedback.
I think Tim Kelsey has got the right ideas about using online feedback from patients about their experience of care, but it has to be linked with responsiveness or, like Mid-Staffs nothing happens even if the organisation has the feedback. So commissioners and providers must be made to be responsive.