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A new and powerful relationship with patients 

Marcus Powell considers how, in a digital world, patients can embrace the opportunity to become partners and share in the decision-making that affects their care.

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The NHS five year forward view talks about harnessing the 'renewable energy represented by patients and communities' and the need to 'engage with communities and citizens in new ways, involving them directly in decisions about the future of health and care services'. We know that one of the founding principles underpinning the NHS at its best is that it’s ‘of the people, by the people and for the people’.

Now, more than ever, this is becoming true – not because the Forward View says it but because it’s demanded by patients, communities and the overall population the NHS serves. Simon Stevens recognised this changing relationship when he talked about the NHS as a social movement. This can’t be controlled or mandated - it’s happening and it should be embraced and celebrated as a force for good and renewal.

In a binary world, the access to information and knowledge by patients eager to share in the decision-making process regarding their care is restricted to the medical profession. This colludes with the ability for the powerful experts to remain powerful. But in a digital world, information and knowledge is freely accessible to everyone – which challenges the traditional notion of leadership and power. Everyone becomes a leader and everyone becomes powerful. This is a fundamental challenge to the old paradigm and enables patients to truly embrace the opportunity to become partners and share in the decision-making that affects their care.

This is easier said than done. But the choice is not whether, but when, health care leaders will ride this wave. Failing to do so will see them swamped.

With the aim of supporting new and positive innovations in this space, the team at The King’s Fund has been nurturing this changing patient relationship for the past 12 months by supporting a number of projects where patients have worked in 'collaborative pairs' with health professionals. This has given us insight into the power when patients and healthcare professionals collaborate in determining individual care pathways. Today we publish a new guide to building collaborative relationships with patients based on the lessons from this work.

Developing this way of working on a wider scale requires support and a change of attitude. The power to determine care pathways has to be a shared decision. This requires a fundamental shift in power dynamics, which will require support to unlearn generations of behaviour.

One way of providing this support is seeing patients as partners recognising that the pathways for development of patient and community-based leaders is historically under resourced and undervalued in comparison to the investment in leadership for clinicians and managers. The King's Fund is therefore keen to work specifically with patient leaders to support their practice as leadership partners.

Central to this is a move away from a ‘them and us’ way of relating to a much more collaborative approach, and that this will need a shift from all of us in the way that we think about our leadership roles and the validity of the different perspectives and expertise that we each hold. Collaboration is not about compromise – it brings the best from everyone to find new and potentially exciting innovations.

With a view to tackling this, The King's Fund runs a programme on leading collaboratively with patients and communities, and is also looking to build up a national network of previous attendees that will put a name to this new relational dynamic and support both patient and health care leaders to move into a different role where leadership is shared.

To reinforce the Fund's commitment to this agenda, we are also announcing the appointment of Mark Doughty, co-founder of the Centre for Patient Leadership, as a member of our staff. By appointing Mark, we aim to help address this and to embed a collaborative approach to working with patients across our work.

Working in partnership with patients has and will continue to be a journey for the Fund and we are learning many lessons along the way. We also know that there are many other people and organisations who are doing great work and who have championed this agenda over the years. By making a new commitment to working in this way, we hope to encourage others to do the same. This is why we are calling on every NHS organisation to commit to working with patients as partners and ensure that their perspectives are embedded at the heart of everything the NHS does.