3rd Spring Workshop:
Balatonvilágos, Hungary,
17th May 2001

Howard Davies

Good Morning,

David has kindly and bravely agreed to present my speech to you today in my absence. It is with regret that my circumstances have changed and I am no longer able to speak to you in person. I am grateful to David for presenting this speech, and for the preservation of David's creditability want to stress that this speech is very much my own personal views based on twenty years of experience of professional health care provision to people in English psychiatric care services. The first ten years of which was spent acting in what I was told was people's best interests, and the last ten years questioning whether it is indeed in people's best interests. I feel like I have been part of a national illness service, and so find some irony that we are discussing quality in healthcare based mainly on people's experience of illness. I guess we should be therefore talking about "Quality in illcare" but in English language that has a fairly negative connotation.

I have been invited to talk to you today about quality in healthcare from the patient's point of view.

The title is in itself interesting, like should we have been considering any body else's point of view when thinking about quality in healthcare. Does the fact that I am now talking about quality from the patients' perspective mean that other speakers have been talking about healthcare quality from other perspectives?

The answer to these questions is probably both yes and no. There are of course other perspectives to consider when thinking about the quality of healthcare. There is the perspective of the wider public, Government, patients' families and friends, health care givers, funders, the media etc. In fact everybody with interests in healthcare probably has a perspective on its quality. However, it is possible that these perspectives will not be the same and quite likely not shared.

So whose perception of quality is the most important, probably the one who has the most power and influence.

In order to talk to you about quality in healthcare I want to tell you about buying a pair of trousers.

When going to buy clothes it could be argued that the customer is the person who determines what quality is by their judgement to purchase or not. If they think a pair of trousers is of good quality then they will buy it, if they do not think it to be of quality they will not buy it. Having heard this I am sure many of you will be formulating thoughts that say this is not a measure of quality. Yet it is a common expression to say that a nice pair of trousers, it is of real quality. What factors are at work to influence this conclusion. It is unlikely that the customer has carried out extensive research into pair of trousers and has at their disposal a range of comparative data that enables them to make that judgement. They are probably relying on:

-Previous pair of trousers they have had, and from this have formed a notion of what was a good pair of trousers for them (Experience)
-Pair of trousers they have seen over people wearing what looked good and what looked ridiculous (Observations)
-What they have been told about pairs of trousers by other people and through the media, magazines, television etc. (Information)
-What they can afford to spend on a pair of trousers (Cost)
-What they want the pair of trousers to do, keep them warm, look good, match other clothes, fit their body (Performance)
-Thoughts and fantasies about what sorts of pairs of trousers they would like, before entering the shop (Expectation)
-Looking at several pairs of trousers and trying them on in more than one shop (Testing)

Each of these elements will not be equally balanced and are liable to dependent on the individual. We could ask shoppers in a clothes shop what influenced them to buy a pair of trousers or not. I am sure that we would find their answers involved aspects of each of the above elements, but to differing degrees. Therefore the judgement of quality would vary person to person. The customer may well ask the shopkeeper to assist them in making a choice. They might well ask the shop keeper to recommend a pair of trousers. The shopkeeper will have their own notion of a quality pair of trousers, which like the customer might be based on their own experience. However, they are more likely to make a recommendation based on their position as the shopkeeper. They may well consider these elements:

-Their previous experience of customers and what pairs of trousers customers seem to like and purchase (Experience)
-Pairs of trousers that the shopkeeper sees people wearing (Observation)
-What prices customers generally are prepared to pay, general information about pairs of trousers are selling currently in the market, what styles are in fashion, trade magazine articles (Information)
-The price the pair of trousers cost wholesale and the margin of profit on each pair of trousers(Cost)
-Which pairs of trousers seem to please most customers, and have the lowest return rates as being faulty (Performance)
-That most customers entering the shop asking for a recommendation of a pair of trousers probably intend to buy one (Expectation)

The goal for the customer is to buy a pair of trousers that they are pleased with, the goal for the shopkeeper is to sell a pair of trousers to the customer that the customer will be pleased with. The pleasure for the customer will be based on having their expectations met or exceeded. The pleasure for the shopkeeper will be to have provided a service, in this case the sale of a pair of trousers, that met or exceeded the customers expectation.

All sounds pretty straightforward doesn't. So you're the customer you tell me what you want by way of a pair of trousers and I will provide you with a pair of trousers that is more than what you want, and then you will say that I have provided a quality service. This could be:

-to sell you a decent pair of trousers for less than you anticipated having to spend,
-to sell you a superbly constructed pair of trousers which is superior to many other pairs of trousers and beyond that which you thought was possible in the world of pairs of trousers,
-to sell you a pair of trousers which is the envy of other people

and so on.

What I am driving at here is that quality is often perceived as being something more than average. One may refer to poor quality or good quality, the ends of a spectrum. One does not often say that was of average quality.

So if the shopkeeper exceeded his customers expectations each time, he would build up a reputation for providing a quality service. However he has to ensure that he remains competitive with other shopkeepers who sell pairs of trousers. If his pairs of trousers cost more than another shopkeepers then he relies on his pairs of trousers being superior, by other measures, fashion or function, and that there are sufficient people prepared to pay his costs. If his pairs of trousers cost less than other shopkeepers than he has to ensure that he can still make money, and that there are customers who are prepared to have less fashion or function. All the while he needs to be aware of what the other shopkeepers are doing and in order to maintain a quality service make sure that his pairs of trousers exceed the customers' expectations by at least one measure: cost, function, or fashion.

By doing his market research and working to make sure his service and goods exceeds customers expectations then the shopkeeper will be providing a quality service. The ultimate judgement on this will be passed by the customer purchasing trousers from his shop. If customers do not buy his trousers then the quality of his service is irrelevant.

In this we see the emergence of performance as a key component of quality.

Lets look at performance and quality from another perspective by me telling you a story from the wonderful British railway system.

One of the British railway companies was fed up with criticism about its trains always running late. So the Director of the train company decided to have a 100% day. A day on which all the trains would run on time. The Director sent out an order to all train drivers that the trains must arrive at their destinations on time.

So come the appointed day the trains set off, and during the day they all arrived at their destinations on time. In order to arrive at the destinations on time the drivers missed out stopping at some of the stations on route. The Director of the train company was able to proudly tell the press and Government that all the trains ran on time. For the passengers on route they were able to stand and admire the speed and punctuality of the trains, but not able to get on as they weren't stopping.

Performance like quality can be measured differently according to the perspective you have, customer, passenger, shop keeper, train driver, Director, press or Government.

In the case of the shopkeeper if the customers don't like the service the go to another shop selling trousers. In the case of the train company the passengers don't have that choice. You either catch the train or you don't.

This is often a similar situation with health services. The patients rarely have choice. I have been to see my General Practitioner and did not like his service so I going to go to another General Practitioner. I don't like my local hospital, so I am going to use the other one next door. Picture this, your high street filled with healthcare providers competing with one another for your custom. You could be pretty sure that the quality of healthcare service would improve, at least in terms of the consumer. Which is another important feature of health services who is the consumer, the patient. Well yes the patient does consume the service. But not often is the patient the purchaser. Even in private health care rarely does the patient pay directly for the health services they use. Most often health is purchased by agencies working on behalf of Government or insurers.

So the high street healthcare market would respond not to the consumer, but to the purchaser. After all, if the purchaser said to the consumer you will consume your health service at Dr "X's," it is unlikely that the patient will say no thanks, I have heard that his service is poor, therefore I am going to pay myself to use Dr "Zs."

The result of this is often healthcare provision that is geared to meeting the demands and expectations of third parties, not patients. So it is the third parties who seek to establish quality and performance measures to test each health care provider's services.

The danger here is that you end up buying trousers for people, based on what you think is in their best interests. "Go and get your trousers from Rupert's, all are available research says that bright yellow tartan pants are popular and functional." Well your research would show that because nobody has any other option than to go to Rupert's who only has bright yellow tartan pants in stock.

So if you can't facilitate customer choice, because your service has a monopoly, then I guess you look to reassure you customers that they are still getting a quality service and performing service even if they can't test it by shopping around.

In Britain since the late 1980s Government and Government agencies have been seeking to reassure people about the quality of the services provided by creating performance targets. The service you are getting is a good service because it is meeting or exceeding the performance target.

Back to the train company. Why did the Director need to have to show that his trains could run on time to their destinations? So that he could meet the Government's performance target. The Government can then tell people they have a quality rail service. Most people reading that will be reassured, except for the passengers who weren't able to get on the train because it didn't stop.

Healthcare covers a range of services that is somewhat broader and more complex than trouser provision or rail travel. For example, one could assume that your person looking for trousers, or wanting to travel by train has a notion of what is reasonable to expect. Healthcare has not the benefit of being sufficiently understood to rely on consumers having a notion of what is reasonable. In fact successive post-war European and Western Governments have avoided the debate about what is reasonable to expect in healthcare. How many people here have heard their Government's say, "We have decided that we are no longer going to treat "X" condition because it is unreasonable in economic terms." How many political parties set out a manifesto that includes making decisions about what can be afforded to be provided and what cannot. Often this leaves civil servants and healthcare professionals having to make decisions about rationing healthcare. All to often this is done in a less than open and honest way. In England we have become fixated with "waiting lists," the health services' version of trains running on time, with performance targets set across a range of health service activities. With great interest the government and media look to see the results of waiting list times. The government keen to show that waiting times have reduced, sections of the media keen to point out where they have not. The assumption being that if waiting list times come down then the health service is more efficient and it is of a better quality. There have been several versions of the waiting list times definitions and measures, I guess we will get a set finally that can be relied upon to show a reduction.
We have some other great measures of health...death. Rates of death by suicide, heart problems, breathing problems, cancers. Health services are set targets to reduce the numbers of these. Because I haven't killed myself does that mean I am healthy? And does this reveal a quality health service. I sometimes think we measure things because we can, because some other things are just too difficult or unreliable to measure.

I remember looking after a person who was referred to me by a general practitioner with depression. That is the person was depressed, not the General practitioner. The person had been given anti-depressants, had taken time-off work, but was still feeling depressed. I assessed the person and found that they were not happy, their appetite had diminished, they were having difficulty sleeping, they were prone to bouts of irritability, and had repeated thoughts about killing themselves. I offered the person regular weekly counselling, during which time they told me how unhappy they were and told me about some of the sad and difficult things that had happened in their life. After six weeks nothing seemed to have changed. In frustration I asked the patient what did they think would happen when they went to the doctor. The person said that they thought the doctor would give them something to make them feel less unhappy, which is exactly what the doctor did, unfortunately it didn't make them any less unhappy. So I said in light of that what would you do now, nothing different the person said. Although the pills had not worked the person didn't know that anything else could be done. I suggested to the person that we went back and saw the doctor to ask if he had any other ideas. He suggested that we went to see a psychiatrist. The psychiatrist suggest some different pills, and if they didn't work then the person could attend the day hospital. The person duly took the new pills which made no noticeable difference. The person said they felt as unhappy as ever, and no was preoccupied with negative thoughts about being a failure because they had seen a psychiatrist. The person then went off to the day hospital three days a week and attended some groups to talk about your problems, learn about relaxation, and engage in some diversional recreational activities like pottery. Predictably not much changed as a result except that the person said they found the pottery interesting and they quite liked talking to some of the other patients. I asked the person what they thought a day hospital would do, they said they really didn't know. I then asked them whether they thought they were ill and how they would know if they were better. The person said that they noticed they had started to get ill when they spent more time at home alone after they had been made redundant from work. So how would they know if they were better. The answer was, "...when I had more energy and felt like I wanted to get up in the morning."
"What would you want to get up for?"
"To go to work."

To cut a long story short I the person in touch with a local social firm that was contracting for real jobs for people recovering from periods of ill-health. Within a matter of weeks the person had gained experience of a couple of job placements, and had found that his work skills experience was helpful to other people attending the project. In partnership with another member of the social firm he set about sorting out the firm's administration. Two months later he told me he felt okay and stopped taking the pills.

I asked him at our last meeting what he thought about the health service he had received. He said he thought it was really good because it had got him back into work. Now of course it is possible that the pills helped, and from the GP through to the psychiatrist and the day hospital we could all be satisfied that our service had been successful. I asked the person what bits of the service he would change in light of his experiences. He said that he wished he had been told about the social firm earlier because he would have opted for that before the psychiatrist and the day hospital, but he didn't know such things existed and he didn't like to question the doctors.

Now all the participants in that story can walk away confident that a positive outcome had been achieved...they had performed. The quality of the service, well the person wasn't dissatisfied, and all records show that the service he was given was to standards. So based on that we have no need to change our services, and we can rely on the measures we used to assess performance and quality so that in future people with similar presentations can have two different anti-depressants, see a psychiatrist, attend a day hospital and then if lucky get an opportunity for a passport to recovery, in this case a work placement. From what the person told us we could miss out a few of those stages, yet there were no mechanisms in place for his experience to inform quality monitoring.

So where does this leave us with quality in healthcare.

Quality is hard to measure consistently. What one person considers to be of high quality another person may consider to be of low quality. In order to deal with this challenge it is tempting to look for that which is reliably measurable. This needs to be treated with caution as one can end up measuring because one can.

What if the person in the above story had been paying for his healthcare do you think he would have been satisfied. I doubt it. Should he use services again he may well go to his doctor for some pills, but then he might look for something like the social firm. He would through his ability to purchase demonstrate what he thought to be a quality service.

The subject of healthcare is people. The aim of healthcare is to improve the experience of health for people. How can we know this has been achieved unless we ask the people themselves. We need to wake up to the fact that people are increasingly well informed and aware of their rights. The days of people believing "doctor knows best" are fast receding. Through the last twenty years we have seen an emergence of alternative healthcare, and self-help, we have seen patients interest groups and campaigning groups emerge based on people's experience of health services and of ill-health and disability. We have seen an increasing demand for health services to be held accountable, and for services that provide what people want. The information technology now increasingly available means that if they doctor doesn't give the patient the information they seek then they are likely to be able to get it elsewhere. It is not inconceivable that people using health services will start to measure the quality of services for themselves.

On the Internet their is a news group called UK Survivors. This is a newsgroup for people who are surviving mental ill health and/or psychiatric services. Reading their dialogue it is rich with informal quality measures about health services with personal recommendations of this approach or that, this service, that practitioner.

In 1635 in England the distressed people of Bedlam Lunatic Asylum partitioned parliament for relief from the poor quality food, the insanitary conditions , and the ridicule and abuse they experienced at the hands of the attendants. Reading the UK Survivors newsgroup and speaking with recipients of psychiatric care in England today it is shocking to see how often these same issues are still raised. Patients have been expressing their perceptions of the quality of services for over 366 years, and have largely been ignored. I can claim this by referring you to the UK survivors newsgroup, and the complaints reports from UK mental health hospitals which reveal that these issues are still of a major concern to patients.

Patients using health care servcies have a unique set of perspectives and experiences. There is only one group of people who sleep on the wards, only one group of people on the sharp end of a needle, only one group of people who have to live a life after the healthcare intervenes, only one group of people who truly know what helped or not. How can we justify not using this invaluable data.

So lets go back to the elements that influenced the customer in pursuit of a pair of trousers:
Experience - Every person's experience of health, illness and health care services should be taken account of and respected out with their need to use health services. In other words do not pathologise or marginalise someone's experiences because they do not match what we want to believe.
Observations - Much can be gained from enabling patients to share experiences with one another. Self-help groups have been shown to be helpful to people in learning to manage long periods of ill-health or disability. Those patients who are experts by experience can be an invaluable support to other patients and to service commissioners and providers
Information - Patients need to be given as much information as they want to enable informed decision making. Just because a patient doesn't ask for information is not a reason for not giving it. Every person needs to know what information is available in order to make a decision about extent they wish to be informed.
The Dutch General Health Act (1994) requires in law that every patient for whom treatment is proposed must be given at least two different options for treatment that must be fully explained to them, or their family/legal guardian. This then forms the basis of treatment contract between the doctor and the patient.
Cost - Patient need to be told the cost of health care interventions, not just in terms of fiscal costs, or maybe not even, but in terms the cost to the patient. Your hospital admission will last three days after which there will be a three month recovery period, during which you will not be able to work.
Testing - Come and have look at our health services. This is where you would be staying
whilst in hospital, these are the people who would look after you. Would you like to see a similar service in another organisation. Here are the reports of other people who have used our services etc.

If the above elements are properly attended to then the next two elements can be used to gain each patients perception of the health services they received. This then forms core quality monitoring which if applied in 100% of people could be used in aggregate to informed overall service monitoring and service development. If both the "expectation" and the "performance" elements are attended to then they can provide valuable comparative data.

Expectation - What do you think would happen? What do you think they services would be like? How long do you think you will be in hospital, who will you meet there etc. This can be applied as an entrance survey at the first point of contact with health services, which would then enable its use not only in aggregation for overall service planning, but also individually for personal care planning.

Performance - Did the health care interventions work for you. Did they achieve what you expected. What bits of the service were good, which bits not so good. This can be applied through exits from service use interviews, ongoing assessment whilst in services by independent people.

I would contest that the issue is not whether patients should be involved in setting measures for quality in healthcare, but how. If health services do not wake up and smell the coffee, they may well find that the measures of quality identified by patients is made influential on services through the campaigning and political pressure. The genie is out of the bottle and the mystic of medicine is fast evaporating.

Therefore look to the people who use health services as consumers, treat them as valued customers and engage them in service monitoring and development. There is no good reason why you shouldn't.

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