Shared learning database

Advancing Quality Alliance (AQuA)
Published date:
January 2013

AQuA has worked on a national collaborative funded by the QIPP Right Care DoH with 32 national teams to share and embed a culture of Shared Decision Making between health professionals and patients. This work has involved development by AQuA of training resources, patient engagement leaflets, decision grids, recording mechanisms and case studies.

Does the example relate to a general implementation of all NICE guidance?
Does the example relate to a specific implementation of a specific piece of NICE guidance?


Aims and objectives

As part of the 'No decision about me, without me' agenda Shared Decision Making (SDM) seeks to empower patients to engage fully in their healthcare choices. In 2012/13 as part of their improvement agenda, AQuA (Advancing Quality Alliance) became one of the three providers working on the national Shared Decision Making (SDM) programme commissioned by QIPP Right Care on behalf of the Department of Health, with the aim of embedding SDM in routine NHS care. AQuA's role was around creating a receptive culture to promote and support the change in practice required for health professionals to engage in SDM with their patients. Nearly 50% of patients want more involvement in decisions about their care (NHS Inpatient Survey 2011); and engaging in SDM can provide a structure for both the health professional and the patient to do this. As part of this collaborative AQuA wanted to develop relevant resources for embedding SDM in healthcare professional practice, recording methods so that organisations can evaluate when it has taken place and evaluation methods for developing the answers to the 'so what' and 'what next' questions.

Reasons for implementing your project

Not being properly informed about their illness and the options for treatment/management are the most common causes of patient dissatisfaction, (Coulter & Cleary 2001) as nearly 50% of patients want more information and a greater say in decisions about how they will be treated (NHS Inpatient Survey 2011). SDM is the active involvement of patients as equal partners in their healthcare decisions. It uses evidence-based information about options, outcomes and uncertainties, together with decision support counselling and a system for recording and implementing patients' informed preferences. The SDM team have worked with deaneries, NHS organisations, CCG's, the Expert Patient Programme, Patient Voice and the 32 NHS organisations to develop and evolve SDM education packages, online training, decision grids and methods for evaluation and recording decisions made. The 32 teams have worked within their own areas to develop tools and specific documentation suited to their patient group, utilising the resources developed in collaboration with AQuA to promote patient engagement in asking 3 key questions: - 'What are my options?', 'What are the pros and cons of e'ch of those options?', and 'How do I get support to help me make a decision that is right for me?' Results from the collaborative have shown key organisational achievements in relation to patient centred resource development, in methods for recording shared decisions have taken place and case stories from patients who have noticed the difference in the SDM way of care. Clinical staff involved in the collaborative education programme have self-reflected on their own journeys, many moving from scepticism to belief that SDM is the way to engage patients in care. Care which can provide better consultations, with clearer risk communication, improved health literacy, more appropriate evidence-based decisions, fewer unwanted treatments, improved confidence and self-efficacy, improved health behaviours, safer care and less litigation, greater compliance with ethical standards and potential for reduced costs and better health outcomes (Coulter' 2011).

How did you implement the project

The AQuA SDM collaborative 2012/13 utilised the Institute for Healthcare Improvement (IHI) Breakthrough Series Collaborative model for engaging, educating and communicating with the teams. This model consists of three action periods, followed by three plan, do, study, act periods of incremental change with reflection at the end of each covering the collaborative programme timescale of one year. Utilising the IHI's Extranet facility allowed all the teams to access, upload and share their own data and view information and developed documentation of others involved in the collaborative. The WebEx format was used to engage and communicate SDM presentation sessions to the project leads, to run national information sessions and to share when needed programme information on specific topic areas. We have run training sessions regionally and nationally for the 32 teams and also specific requested education and awareness sessions for various provider and commissioner groups. We have also linked in with deaneries to develop online resources on our own website and e-learning packages which organisations can access for internal learning and development department use to spread SDM tools and skills. As this is a national programme regular monthly reporting has taken place by the Programme Lead to the QIPP Right Care department on the aim: - that 80% of patients in the specified pathways will have been involved in decisions about their care. The funding for the project also came from the Department of Health so costs have been met from these moneys.

For information on barriers to implementation please view the supporting material

Key findings

As part of the collaborative AQuA has used the SURE tool, a validated measure of decision quality developed by O'Connor and Légare (2008) which asks patients to rate whether they are 'sure about the best choice for them', aware of '.. the benefits and risks of each option', '...clear about which benefits and risks matter most to you' and 'did you have enough support to make a decision that's right for you'. Over 2500 SURE scores have been collected from patients, the largest number ever collated, recorded and evaluated. Results from the 2012/13 SDM work have demonstrated that across all 32 teams involved in the collaborative more than 80% of patients have felt involved in decisions about their care. Decision grids have been developed by many of the teams which have then been embedded into organisational policies. Spread and sustainability plans for taking SDM into linked pathways, directorates and further into Trust everyday business have been developed by AQuA facilitators with their respective teams. Feedback from some of the renal teams involved in the collaborative has led to work between Prof Hilary Bekker (Leeds University) and AQuA in the development of a further SHARED questionnaire which is more sensitive to the nuances of the decision making process, this is currently being validated by both parties through engagement with patients. Case studies have been written by AQuA's communication lead celebrating the great outcomes and sharing the news of SDM with a wider audience to further educate and inform on how SDM can form part of everyday practice within the NHS. Some teams have also used the SURE tool to evidence CQUINs on patient engagement areas leading to monetary benefit to their organisations. As part of the collaborative work AQuA has developed some online education resources for any individual or organisation to use as part of their work to use, embed or spread SDM, these are available via the website There is also an e-learning package which has been developed in collaboration with e-learning for Healthcare, and this will provide online training and accreditation for individuals in SDM. Teams themselves have also looked at measures and results pertinent to their own areas/ organisations e.g. increase in uptake on ante-natal engagement in education sessions, reduction in surgical interventions in MSK teams.

Key learning points

Scope clearly the groups you will be working with, have executive or senior manager clear approval and communication to teams about their expected participation/ role in the work. Spend time communicating your key aims with those groups of staff you feel may be blockers to what you want to do, they can end up being your most vocal advocates and blockage removers if they are on side. Clear project lead management from the start helps on short-term programmes, as it means focus on deliverables and measurement can be maintained. Clear role allocation from the start also helps to reduce ambiguity on who is responsible for what. Alongside this is planning and thoughts to how any lessons learnt can be used to spread the programme/ learning to other areas- initially linked ones can work well as these can support each other to understand and develop ideas.

Contact details

Wendy Stobbs
Shared Decision Making Facilitator
Advancing Quality Alliance (AQuA)

Is the example industry-sponsored in any way?