While transparency is important in improving health and care services, one of the lessons we have learned is that people want to understand the story behind the data – merely publishing a graph or spreadsheet is not enough.
As part of the government's commitment to "open up" the public services, last July the prime minister, David Cameron, announced that the Department of Health had agreed to publish specific sets of data previously not publicly available.
There is also a report from the Health Foundation on the impact of public reporting on healthcare quality, which shows that such publication leads to an improvement in the services delivered by an organisation.
The NHS in the south-west has also started exploring what transparency might mean at a local level and we have launched a unique website, Our Health, that provides local information about stroke and dementia services, including previously unpublished data on the quality of local services.
At the start of the project we found that one of the important gaps for people who use the services and for professional staff, was a lack of information about what happened across organisational boundaries – what NHS staff call the care pathway or what might be called the patient's journey.
We talked to patients and carers about what they might want, focusing on stroke survivors and people with dementia. The National Institute of Health and Clinical Excellence (Nice) had recently published quality standards for these two care pathways so there was an evidence-based description of what great care looked like and a clear set of statements describing what services people should expect to receive from the local NHS and partner organisations.
People told us that there was good information about the nature of the condition and the treatment options, with excellent information available from charities such as the Stroke Association and Alzheimer's Society. They also said they did not want a performance scorecard for their local services.
However, there were three areas where gaps were identified. First, most of the information available was national rather than local, and people often struggled to find out what was available in their patch. Second, people wanted to know whether their local services were up to scratch and what they should do if something in the national information was not available locally. Finally, they wanted a range of different types of communications – different channels bringing together leaflets, online services and someone to talk to.
We have worked with the full range of NHS providers and commissioners in the south-west and local authority colleagues. The regional branches of the Stroke Association and the Alzheimer's Society have been our partners, and we have been talking to them about how their networks of advisers and buddies can provide a personal contact, so people have someone to talk to.
We aim to provide five features on the Our Health website:
• Explaining what people and their carers should expect from local stroke and dementia services across all parts of the person's journey, linking this with the Nice quality standards
• Describing the specific local "offer" for stroke and dementia services commissioned by the local NHS and, where appropriate, the local authority
• Providing a directory of organisations that deliver services throughout the person's journey. This gives the organisation the opportunity to describe what it provides. We believe that the directory is the most comprehensive in the region with over 4,000 organisations offering almost 5700 different services, with more being added all the time
• Presenting comparisons of local organisations that enable people to understand the performance of their health and social care services, with the opportunity for organisations to comment on their own results. We have 73,000 data items that form an initial set of 25 indicators across the dementia pathway for each local area in the south-west and 53 indicators across the stroke pathway. We believe this is the most comprehensive set of indicators on these pathways published in a single place
• Providing opportunities for people to feed back on services they have received. We are exploring use of the "net promoter" question.
Last week, the prime minister pledged to boost funding for dementia research and care, including a promise to promote the information offer pioneered by the NHS south-west, which we are rolling out across the south by the end of 2012. From April 2013, information designed and developed locally will be available in all other parts of the country. There are options to expand the information covered, especially from domiciliary and residential providers of social care, and the ways in which the information can be accessed.
This is only the start of the journey and we are learning lessons all the time. I am sure our site will look different in a few months time as we roll it out across the south of England and to other parts of the country, responding to the Cameron's challenge on dementia care.
Richard Gleave is director of programmes and patient experience, NHS South of England
Guardian Professional.
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