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Patients as agents of change: bridging the gap between "them" and "us"

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The presentation that Alison Cameron made in the opening session of the NHS Transformathon, 27th January, 2016.

The NHS Transformathon was a 24 hour virtual event to connect people from all over the world who are leading the way in transforming the health and care system. It took place on 27/28 January 2016.

The entire event was a live broadcast on Google hangout. You can watch all of the sessions. Go to http://theedge.nhsiq.nhs.uk/transformathon/ and click on the title of the session you would like to view. The content is free and available to all.

If you tweet about the content of the Transformathon, please use the hashtag #NHSTform

Published in: Healthcare
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Patients as agents of change: bridging the gap between "them" and "us"

  1. 1. Patients as Agents of Change . Bridging the Gap between “Them”& “Us”
  2. 2. We are at a turning point in health policy: the nature of 21st century health, changes in society and technology call for a radical change of mindset and a reorganisation of how we govern health in the 21st century. This changes the role of the health sector, of health professionals, of patients and of citizens – and of other sectors and societal actors including the private sector. WHO 2020 Framework
  3. 3. Current healthcare system boundaries are limited by a professional-knows-best mindset which can be blind to the powerful actions and forces that shape health outside of the boundaries of the healthcare system Batalden, BMJ 2015
  4. 4. NHS England Five Year Forward View A new relationship with patients and communities We have not fully harnessed the renewable energy represented by patients and communities But collectively and cumulatively (these initiatives) and others like them will help shift power to patients and citizens ,
  5. 5. Patients are impatient of being treated like chipped flowerpots in for repair Gerda Cohen
  6. 6. Self government by the patients must involve pretence because as soon as they encroach on real power they are brought up short Gerda Cohen
  7. 7. Where are we on the ladder? Patient Leadership Patient Voice/influence Passive Patient
  8. 8. FREQUENT FLYER MILES 15 stays in psychiatric units One year trapped on MH ward “delayed discharge due to housing” 2 residential rehabs 1 therapeutic community 1 Social Services hostel Over 100 acute hospital admissions 18 months in supported housing 2 substance misuse day programmes 2 dual diagnosis day programmes
  9. 9. Frozen Assets
  10. 10. Beyond traditional Involvement to Co-production and Patient Leadership
  11. 11. Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change NEF/NESTA 2009
  12. 12. CORE PRINCIPLES Assets: Transforming the perception of people from passive recipients to equal partners. Capabilities: Building on what people can do and supporting them to put this to work. Mutuality: Reciprocal relationships with mutual responsibilities and expectations. Networks: Engaging a range of networks, inside and outside ‘services’ including peer support, to transfer knowledge. Blur roles: Removing tightly defined boundaries between professionals and recipients to enable shared responsibility and control. Catalysts: Shifting from ‘delivering’ services to supporting things to happen and catalysing other action.
  13. 13. Patient Leadership?
  14. 14. Patient Leaders are those patients, users and carers who have the confidence and capability to influence change. Their main purpose is to improve health and well-being in the community and/or improve health and social care services. They do this by working with others to influence decision- making. David Gilbert and Mark Doughty
  15. 15. The new concept of Patient Leadership…describes an aspiration – that a portion of these active patients may come to be recognised as service leaders, equal in esteem and influence to managerial and clinical leaders. National Voices
  16. 16. What’s stopping us?
  17. 17. Defensive positions
  18. 18. It seems safer to embrace what we know than to let go of it for fear of the unknown. Narcotics Anonymous
  19. 19. The moats we dig between patients and clinicians can drain spirit from both. Don Berwick
  20. 20. In moments of crisis the wise build bridges The foolish build dams Nigerian Proverb

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