Democratisation of Voice and Data: who owns user stories?
June 13, 2007 :: by Lee 1 responses
Related download: 20Mb PDF presentation about Democratisation of Data in Health Care, from the recent Demos/Patient Opinion event held at Guys Hospital Pathology Museum
The UK Department of Health recently announced a major new web project called 'Healthy Choices' that is intended to help patients choose where to receive treatment and find out more about their local health services. The service is now in beta testing at www.nhschoices.nhs.uk. We understand it is being delivered through a commercial joint venture already established in conjunction with healthcare information provider Dr. Foster, which you may have heard of due to the controversy surrounding the Deartment's rather generous (*ahem*) pre-money that underpinned their investment of £12m in the joint venture last year.
The site will provide access to existing public domain information about NHS services and their performance against government targets, as reported by Kablenet:
"Patients will soon be able to choose, with the click of a button, where they want to have their treatment," said [Health Minister Patricia] Hewitt. "Our new choice website will allow the public and clinicians to access a range of information through one super site that will act as a gateway to navigate NHS services." ... The Choices website will include: "searchable comprehensive directories e.g. on hospitals, GPs and care homes; comparative data on hospital waiting times, cleanliness and readmission rates; (and) Individual and family health risk assessments based on age, sex and location," according to the Department of Health.
Much of this is similar to the original remit of Choose and Book, and also pulls together existing NHS online information in a more friendly way. It is rather Web 2.0 in its visual language, but not in any meaningful sense of engagement and network effects - it is more publishing than participation at this stage, thought that may change.
But this "super site" also intends to replicate the Patient Opinion service that we helped build, and which the DoH evidently likes and supports. I am puzzled by this. Why would a government department would want to stomp all over the business model of a well-established social enterprise to deliver an "official" version at many times the cost, when there is very little evidence that government sites are the right place to be encouraging people to tell personal, sensitive and often difficult personal stories about their experiences of healthcare. Typically, this kind of over-funded e-government project ends up being run largely by high-day-rate temporary contractors rather than the personally-committed and passionate social entrepreneurs behind Patient Opinion, which further impedes the value it can generate and raises questions about sustainability when the pump-priming runs dry.
Paul Hodgkin of Patient Opinion has blogged why he feels the democratisation of voice is so important:
In a conversation people communicate in language that is natural, open, honest, direct, funny and often shocking. Whether explaining or complaining, joking or serious, the human voice is unmistakably genuine. It can't be faked.
Most corporations and organisations, on the other hand, only know how to talk in the soothing, humourless monotone of the mission statement, marketing brochure, and your-call-is-important-to-us busy signal. In the ears of patients and public this can sound like the same old tone, same old lies, same old corporate steam roller rolling over our helpless, small, warm bodies.
But learning to speak in a human voice is not some trick, nor will corporations convince us they are human with lip service about "listening to customers." They will only sound human when they empower real human beings to speak on their behalf.
Paul and I recently spoke together at an event organised by Demos and Patient Opinion about the democratisation of voice and data. His moving call for the democratisation of voice as part of the emerging social web was fantastic, and all the more poignant given he is a descendent of the founder of the Pathology Museum where the event was held. The original Dr. Hodgkin put bit of bodies in jars to advance medical knowledge, whereas Paul is capturing and encouraging human voice in health care to enable patients to have a greater say in the improvement of NHS services.
For my part, I tried to argue that democratising data and sharing it within neutral spaces where citizens and government come together is a necessary precursor to further innovation in the field of public participation, especially in areas like health, where the "users" of the NHS are such a massively underutilised resource when it comes to improving services. You can download my presentation here in a rather bloated PDF format.
Writing in the Guardian, Paul and his colleague James Munro subsequently made a cogent case for the impact that these ideas could have on improving health care services:
The NHS concentrates on efficacy and efficiency but these are aesthetic aspects of care. Questions such as: were you included in decisions? Did staff make you feel precious or worthless? are just as important. Too small to be dealt with by formal contracts, they gain some bite by being voiced on the public space of the web. Add comments from patient groups, and feed these conversations back to hospitals and primary care trusts, and the small voice of the individual can become the kernel of real change.
The School for Social Entrepreneurs remark that the fact that the Department of Health has decided to "own" this territory and potentially threaten the existence of Patient Opinion is sending very mixed signals with regard to their stated goal of involving social enterprises in service delivery.
I am hopeful some of the teams and individuals involved in Healthy Choices will do a good job, and of course we are happy to share any of our insights or experience from working on Patient Opinion (for free, of course!) if that would help. Ultimately, we would like to see them succeed because this will being much more attention and traffic to the concept of direct patient story-telling and sharing experiences. There is room for both a government and an independent Doctor-led version of Patient Opinion, I think. But it occurs to me this is perhaps not as easy at it looks, which may be why the patient voice element is so de-empahsised in the NHS Healthy Choices beta site. I also think there are some other important but wider questions raised by this episode:
Where should citizen participation and engagement take place?
Is national government capable of hosting and encouraging genuine civil society participation? In the late New Labour period, the urge to be seen to "consult" on every conceivable issue has become very tired indeed, and rather than go to government super-sites to get involved, perhaps it is time to think about doing it the other way around. Perhaps we need a middle ground where citizens and government services can come together to provide information and deliver services?Who should own patient opinion data?
This question is most critical when it comes to patient information and opinion. I understand Patient Opinion proposed some form of ESCROW for patient data shared with the 'Healthy Choices' site, to overcome legitimate concerns about government (and ironically private sector) ownership of patient information, but this was rejected by the Department of Health. Why? Surely they have nothing to gain from owning patient stories? They are presumably not planning to sell advertising on a site like this, so I don't see the commercial or social value in insisting on ownership.Will people trust an official government site more than they do an independent social enterprise dedicated to listening to and sensitively dealing with their stories?
To my mind it makes sense to keep the process of eliciting stories and experiences as close to the patient as possible, and for this to be organised on strictly non-political and non-commercial lines. This is better for the patient, but ultimately more effective as a mechanism for aggregating upwards reliable information. It makes more sense to support the efforts of a social enterprise trying to achieve this rather than replicate their work in an official capacity.Any thoughts from other people working on similar applications designed to give service users a meaningful voice in service improvement?
I am a GP in SE London and am co-director of a company called PAERS working with EMIS, the largest software provider for GPs in the UK. We have enabled people to see their full GP record online wherever they have a web-browser. The information they see is linked to accredited information and advice about their health problems and their test results. So, not only do they have access to their health data, the data hopefully turns into information and intelligence.
We feel this is transformational technology, potentially altering the relationship between patient and clinician. It enables:
- more efficient use of time for patient and clinician
- more confidence and understanding by the patient
- the ability to correct errors
- carers can keep up with events and support their carees better
- it puts an onus of honesty on the clinician
I would like more of a dialogue on the potential that these approaches have in opening up shared decision-making in medicine and other fields.
Using these interactive collaborative approaches has always seemed to me the right way forward and I have helped set up community development approaches with people on the ground in our communities in London. I feel rather lost about how we might make this work online.
An example of the record access system for a dummy patient can be seen at:
http://www.paers.net/ehr/test_login.asp
I have had a discussion with Paul H and would like to consider how these approaches both fit together and can be made to fly further.
Brian F