Notes from the field of public involvement

Monday, 18 September 2006

12-Country Patients' Opinion Survey - 'information' and 'access' top the priority list

The blog recently has featured articles and responses on patient involvement – see Do Not Disturb by John Launer on 11/9 and the two postings prompted by the feedback the Patient Opinion Organisation is collecting and using - The Power of Positive Postings on 4/9 and the initial piece The Patient Opinion Organisation on 11/8. The focus is on the individual account either standing alone or aggregrated to spot trends and set priorities. Our submission to the Department of Health – blog referenced under the title People –the rarest resource – emphasises that the point of departure for patient representation must be the individual - meeting her of his needs and answering their questions, solving their problems.

We were given a chance to put this focus in context with the publication and presentation of a survey done for IAPO (International Alliance of Patients’ Organisations) and presented at a conference this summer in Geneva by Jo Harkness their Policy and External Affairs Director setting out ‘The Patients’ Role in Influencing Access to Health’. See the Press Release page and access the PowerPoint presentation.

‘Perceptions of Healthcare – a survey of Patient Organization’s Concerns’ by Consensus Research Inc in 12 countries (10 EU and then Canada and Nigeria) gives us the aggregated views of 1200 adult members of patients’ organisations in those countries. The survey and the accompanying presentation are both available on their website. The work was supported by Pfizer.

The key needs that come up are access and information – always top of the UK National Consumer Council Consumer Principles (Access, Information, Safety, Value for Money, Redress and Representation are the ones I can remember off the top of my head).

It is interesting but not surprising that next on the list with 95% strongly agreeing with the proposition that "patients have the right and responsibility to participate, to the best of their ability, as partners in making healthcare decisions that affect their lives". (See the Table headed ‘Where patients stand on healthcare issues) Not surprising since all the people answering the questions were members of organisations dedicated to just that. As many agreed strongly with a statement about a right to ‘patient-centred healthcare’.

These wordy lengthy questions admit very little possibility of dissent – who in this particular sample of people is going to disagree at all let alone ‘strongly disagree’ with the sort of statements put to them here. The survey avoids the question of money entirely ( I don’t blame them – it is always difficult in multi-country studies with different health payment systems) and does not ask any questions ‘the other way around’. E.G do you agree/disagree with the proposition that ‘(insert health care worker/ organisation of your choice) are a self-serving and protective cabal interested only in doing as little as possible for as much money/ profits as possible?".

But the snag is with this high level of generalisation is that it looses its bite and focus and musters high percentages around ‘big’ propositions which no one seriously dissents from but which are not reflected in the real world of day to day health care delivery. Faced with this, one good way to read the data is to look at the areas where agreement with a specific proposition or importance ratings decline.

We see patient scepticism with only 65% supporting a computerized central health information system and even fewer interested in family health guides (59%).

For us, the most interesting finding of all given the 95% support for participation in decisions about their own lives, is the much lower proportion wanting to contribute to health care policy. The Table "What patients want from their healthcare system" shows that only 63% rate as very important ‘engaging patients in health care policy decision-making to ensure that policies reflect patient and family caregiver needs’.

This is an important distinction and disconnect between patient involvement in their own care and decisions about care for others.

The challenge here is to create the environments and processes that dissolve this disconnect and create more understanding that decisions about individual care are increasingly shaped by decisions made by bureaucrats a long way from the health service delivery front line. How do data like these translate into action at local and individual level? How we join up the high level statements of principles, about rights etc to the day to day patient and health worker experience, the anecdote and the individual experience in a way that is reflected in the institutions and processes that deliver our healthcare?

How for example do we reconcile the data in the 2006 EuroHealth Consumer Index compiled by the Health Consumer Powerhouse organisation and based on their selection of ‘user-friendly’ indicators with the IAPO study? Their stated aim is " to put this consumer empowerment tool into an European Union context. Taking a strong consumer view, the 2005 EuroHealth Consumer Index wants to add to already existing evaluations by institutions like WHO and OECD. Introducing a different perspective, our Index ranks how user-friendly the national healthcare turns out in the twelve largest European countries."

Something to come back to.

Finally I loved the question about reducing paperwork for physicians so that they can spend more time .. well the survey said ‘with their patients’. Where else ? I can think of quite a few alternatives. What would you insert here? Windsurfing? Down the pub? Growing marijuana for the purpose of private pain relief? Certainly only 67% of our respondents thought this important.

Take a look a the following tables:

Agreement with healthcare statements

What patient's want from their healthcare system

Where patients stand on healthcare issues

Source: The report and presentation on patientsorganizations.org from ‘Perceptions of Healthcare – a survey of Patient Organizations’ Concerns Summer 2006’ commissioned by International Alliance of Patients’ Organisations’ conducted by Consensus Research Group Inc.

Colin Adamson | (Problem occured connecting to database: The server requested authentication method unknown to the client