Notes from the field of public involvement

Friday, 11 August 2006

The Patient Opinion Organisation


The M-A-C Partners all work to bring the user voice into organisations. All three of us believe that this is how organisations can work to their benefit as well the benefit of those who receive their goods and services.

The great gift of user comment lies in its spontaneity and directness. The voice of the individual can touch the heart and get through in a way that a spreadsheet table cannot. The information comes unmediated by a questionnaire or an interviewer's enquiry and is not mindful of the listener's expectations or sensitivity. Gold dust for marketing people - personal recommendation is one of the most powerful inducements to try. But how can we do this in an organised way?

The internet I hear you cry - the new communication pipeline where all shades of opinion and type of person come together and exchange views freely. We see diagrams like this:

Diagram: Patients - Patient Opinion website - NHS Subscribers

I took this from a presentation made by the organisation Patient Opinion to the Prime Minister's Delivery Unit. Read all about it on http://blog.patientopinion.org.uk/ where James posted his account at the beginning of July followed by an account of how well they did at the New Statesman's New Media Awards on July 26. (There is a little insight into the blogger's life with the entry on the day before the presentation is apparently posted at 03.54 - the early shift. This is called 'fitting in that little extra job'.) The question posed in their presentation was "The NHS and Patient Opinion: Is web-mediated feedback about public services effective?"

Interesting choice of word - 'effective'. Effective would mean to me 'did the people who received the feedback do anything with it?'. But the question is really about usage by patients, friends and carers. Do people know about it and how do they know about it?

The presenters address this with their bullet points saying

Agreed but then they say

What this says to me is that they do not know how to market it yet. We know the problem. The Patient Opinion site is not about complaint solicitation; it offers no cash prizes for the best hospital story; it does not enter you into a prize draw for a new liver. How do they get the people in? Being short listed for a prestigious media prize and being written up in the Guardian is good and welcome PR but does this drive members? Indeed they are not looking for members but another more engaged level of participation - that of contributors. Contributors with key board skills, access to the internet, time, energy and unembarrassed by their stories appearing - albeit anonymously - on the site; contributors who are 'responsible' and do not spew out bitter and libellous anecdotes about evil minded clinicians etc. I am not sure how many people like this there are out there.

As fellow labourers in the public and patient participation area, we are very interested in all the channels whereby people can make their voices heard and get responses from the organisations that have served them.

I read a lot of the 'moans' - always and perhaps sadly more interesting than the compliments - and I wonder how many entries are from health service workers. The vocabulary used in this extract suggests medical knowledge "The ward was run by agency staff, there was no fluid balance being recorded, no physio (she was off sick) and therefore he spent an entire week in bed without being mobilised and consequently died from broncho pneumonia and that was his first and last experience of ipswich hospital!" Fluid balance? Mobilised? The hospital response was to invite contact with the PALS service. 

In our initial response to the Department of Health's recent paper on patient and public involvement, we made the point that all the proposed structures and initiatives hinge on the readiness of patients and public to come forward as individuals and 'stand up and be counted' as a patient activist in Scotland said to us recently.

Are the web and sites like these a barrier or a facilitator for the individual? Does its availability and ease of use prompt those who use health services to share their experiences? More than 2000 people have posted comments on Patient Opinion since the pilot began in September 05. As their blog notes "Just think. The population of England clocks up about 11 million inpatient stays and 44 million outpatient attendances in NHS hospitals each year." Some way to go then.

Our thought as a Partnership - and we are open to debate and contradiction - is that health service users and perhaps people working in it as well are looking above all for a sign that they have been heard and recognised as an individual. So perhaps the main argument for participation is not to tell or post the experience - although that is important - but to be heard, recognised and responded to in a human way that, as my Nonviolent Communication© friends say, is heart-connected. That may be the challenge for the patient opinion website - to change the diagram to a direct connection between the NHS organisations and their users. Can you spot the difference?

Revised diagram: Patients - Patient Opinion website - NHS Subscribers

We have edited the diagram to create a link directly with patients. Create the feedback to the individual user. We would argue that a 'user-focused' model is the key - not  the business model which the presentation discusses at some length. There has to be an emotional or 'feelings' model that starts with the need to share and be connected with others who understand and can respond to a patient experience.

The business model adopted by Patients Opinion does offer reassurance - independence, free to use, anonymity. But that is not enough. To create, say, a million NHS user/diarists will need more compelling arguments than the ones presented on this site. We offer this as the first challenge for the Tritter team at the new National PPI Resource Centre also known as NHS National Centre for Involvement. How can we build capacity and swell the ranks of the joiners? 

And by the way the PPI Centre is running a re-branding competition - you are invited to submit your suggestions. To get the forms email

Related: 4-Sep-06 The Power of Positive Postings - the Patient Opinion response

Colin Adamson | Send feedback