Patient Leaders: The New Sense-Makers?


More and more information is going to be made available to patients and the public as part of moves towards ‘open data’ and ‘transparency’ in the NHS. But we need Patient Leaders to help make sense of it all, otherwise this well-meaning policy may not work.

As a middle-aged advocate for the rights of patients and the public, I am trying to ‘get my head around’ (a younger generation phrase) the notion of ‘open data’. Sounds boring perhaps. But you will have to as well.

The push is for organisations to put lots of data into the public domain, much of which is linked to me, or us, being able to make choices. Data might include information provided to me (e.g. about whether a treatment I am offered works, whether a GP or hospital is any good) or information about me (e.g. being able to access information about me in my patient record). The open data movement is also about information from me (e.g. gathering my views about care or services). Behind the scenes an industry is growing that is focused on pooling huge data sets (‘big data’). Another word milling around is ‘transparency’. This is about ensuring that any decisions made (by organisations and professionals) are based on open data. In this sense, open data is one element of transparency.

Are you with me so far? Even writing this takes me into unfamiliar territory and is a struggle. And I may not have got all the concepts right. But as patient leaders, this is part of the new landscape through which we have to travel.

Making more data available is a no brainer, surely? In an erstwhile secretive NHS, it must be. In some areas, the NHS is awash with data. But in other areas, it is a desert. How can we ensure the laudable objective can be made a reality. And how can it make a real difference to people’s quality of lives, health and experience of using health and care services.

In most areas of my life, I already have too much data to cope with. I don’t change energy suppliers, despite knowing I could probably get a cheaper deal. I haven’t changed my bank since I was 18. I have views (and some data, though not ‘triangulated’ with others) about my GP, but I still don’t change. I have a friend who did choose to be treated in another hospital, partly on the basis of quality, but also because it suited him to recuperate near his family home.

There are other factors at play when making choices, not least the opportunity costs of investing time and energy for perceived minimal gain.

I rely on intermediaries to make sense of the flood of data available about my life. I have a financial advisor, but am toying with trying to do it myself more cheaply via various financial self-help websites. I used to subscribe to Which? but for individual purchases, such as a car, I often go to other ‘independent’ brokerage sites. But who can I trust to be independent and be able to tailor the information for, and with, me?

So, there is a real – and I would argue, growing – need for intermediaries in this new world of open data.

But at a collective level, the trend seems to be for trusted intermediaries, for example in the voluntary and charitable sector, to be crushed. In one local borough, an umbrella organisation for the voluntary sector is struggling to keep its head above water and needs to prove that it ‘adds value’ to the diverse range of other small organisations that support people or campaign for improvements. I do see small projects being funded for third sector organisations around supporting people to be local health champions, peer-to-peer support workers, advocates, etc. But none of this seems to equate to the pace and scale of the ‘open data’ juggernaut.

At an individual level, health professionals are increasingly needing to ‘signpost’ patients towards relevant information or to act as ‘brokers’ in terms of understanding for shared-decision making. But decades of clinical training and narrowly defined institutional roles mitigate against health professionals taking on this role quickly. In the world of personalisation and personal budgets, there is the rise of brokerage schemes – people who can act as advisors. Are they free of conflicts of interests?

So, on the one hand, we need to build the capacity for intermediaries – on the other, we seem to be destroying it. The squeezing out of traditional intermediary organisations means there is space opening up for others who can help me or us (as patients, users, carers) to ‘make sense’ of the vast amount of data flooding the ‘market’. Who will fill the space?

The scary thing for me is hearing people denying the need for intermediaries, believing that somehow ‘putting data out there’ will itself lead to better decision-making. Fuelled perhaps by a public sector ideology of extreme localism, or a private sector view of consumerism, the need for someone ‘in-between’ central agencies and the individual to ‘make sense’ of data is lost. One recent presentation I heard began with the title ‘data and engagement’. There was lots said on the former, nothing on the latter.

On the positive side: Online technologies open up the possibility of entrepreneurial solutions. We know several patient leaders who have set up incredibly effective means to communicate with, and support others, via twitter, and online fora. Check out Dave de Brokart (@ePatientDave), Michael Seres (@mjseres) and Paul Buchanan (@theGBDOC). This is the future. Or the present.

At the same time, corporate interests are invading the space (I’m thinking mammals with Russian accents). Some agencies may cream off a commission or get sponsorship from big companies I don’t approve of, may want to divert me towards a particular decision and have a vested interest in the outcome. Or, they may not ‘feel’ right as they don’t have the same values as me.

Who will win out? The corporates or the patient and community-led entrepreneurs? Who can work with me to ensure I make the right choices and help me and my family make sense of this vast new world? I can do much of it myself, but god knows a need a friend to hold my hand sometimes. And my preference is for someone who understands my small part of that world.


November 2012
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