The Nursing Specialist Group

The INFOrmed Touch Series

Volume 4 - Making the right connections: human and electronic networks

Proceedings of the Annual Conference 19th - 20th Sept 1996 Edited by Denise Le Voir

Prepared for the web by Rod Ward

Communicating in primary care

Mike Bainbridge

General Practitioner Software Consultant with AAH Meditel Telematics Secretary with the BCS Primary Health Care Specialist Group and Alison Young Data Conversions Manager Reuters Health Information also Nursing Director Doctors Independent Network

This is an important first collaboration: Alison and Mike work for different primary care computer suppliers. Mike is a part-time G.P and part-time information consultant. He was recently elevated to the lofty position of Vice-chairman of the Primary Care Group of the British Computer Society.

Alison works full-time as a data conversion manager. For many years she was the Practice Nurse for a general practice where she looked after the information technology. She is an elected member of the Primary Health Care Specialist Group with a special responsibility for linking with the Nursing Specialist Group.

Mike Bainbridge: As Alison and I worked through our brief to talk about Communicating in Primary Care it became obvious that we were actually talking about communicating in clinical care. Clinical care and computers are important and hopefully exciting and fun. As a clinician I am interested in seeing the patients, making them better and doing the best thing for those patients. There are a number of very interesting issues around the way a consultation room is set out and how we use a computer in a consultation. We have a triangle: patient, doctor and computer. A theme to which we will return in this presentation.

It is also interesting to note that despite all our computer systems - we are all drowning in data. Also there are a lot of people trying to sell snake oil and snake oil computers to administrators in secondary and community care. What we need is clinical computing - computing which is for the use of clinicians seeing patients.

Alison Young: We are more familiar with an unstructured record. Take the notes from an acute visit, retyped in an attempt to make the content a little less confusing and a little bit more structured. On top of it - is an attempt to code some of that information. This just makes it even more confusing. Such information could well be passed from one clinician to another within the primary care environment in the hope that somebody can glean from it the piece that is supposedly relevant to them. Hidden

in the middle may be a "refer Macmillan". The Macmillan nurse looking at those two words may well find it rather difficult to decide just exactly what it was the clinician wanted her to do with that particular patient.

As we move towards the next stage of general practice computing, we are beginning to see information actually in an uncluttered, accessible and an easy-to-read format. Computer-based records provide for access by anybody within the primary care environment. Thus we have data which could be entered from the desk of any clinician within a practice and can be accessed by all.

One advantage might be a recall set to say 'Bring this patient back so the Practice Nurse can take a blood test'. I remember many times when, as the practice nurse, someone arriving with "Doctor says that he wants me to have a blood test." A rifle through all the blood tests forms fails to find one with the patient's name on it. So the follow-up question "Did he say what it is for?" elicited a vague answer such as "Umm, well I've been a bit tired - it could have been a haemoglobin." On the computer a referral might read 'Refer to the Practice Nurse for a haemoglobin, and full electrolytes.' -The Practice Nurse then knows exactly what to do without having to ring the doctor,- interrupt his consultation and cause hassle to everybody concerned.

A computer in general practice provides a record that allows clinical staff to put in the data that they want to store. Data that will help them look after the patients better and which will give seamless care within primary care. Is that as far as it goes? It may be that we think that computers are the best thing since sliced bread, but we can go a little over the top on this. I do not think there are many GP's who say "Happy birthday" to their computer systems. But I do know of one surgery where a bottle of champagne was cracked over the server when they opened their new surgery. It did not do the server an awful lot of good.

Mike Bainbridge: What we are trying to achieve is the same status for the computer as for the stethoscope or sphygmomanometer: a tool accepted as part of the consultation. Now there are tremendous barriers in the way of this goal. There is also a lot of work going on with practitioners and computer consultants. In Loughborough a team of software ergonomic people is looking at the utility of their computer packages for use in a doctor-patient consultation.

Returning to the theme of a triangle the top is the patient scratching his head and looking puzzled. In the second corner, probably the clinician scratching his head and looking puzzled as well. Then introduce the third party - the computer. The lines of communication between clinician and patient are familiar, but new one of clinician to computer has been added. The two human participants still have the same agendas. The patient is trying to communicate what is wrong with him, his history, his problem and expectations. He wants some decisions made and he wants to know what care is going to be planned for him. The clinician is trying to communicate with the patient, to make decisions, to work out a care plan and thus to intervene appropriately in a timely way. Add a computer and there is a risk that those clinicians who would rather bury themselves in a paper health record will now bury themselves in a computer screen.

A computer can be very useful, it can monitor, prompt, provide knowledge and support. These are areas are being developed. Now the NHS also has a live network.

Look forward a couple of years and the network could be in the centre of the consultation communication. The patient with a set-top box could be accessing networked medical information. The clinician with his computer could be accessing networked clinical information, with the computer itself accessing networked information. Healthcare could be moving towards self-care and self-learning.

A prospect which raises anxiety among clinicians. Medicine is now too big to keep abreast of the changes even within a narrow field. Clinicians need to be able to facilitate self-learning, co-ordination and communication of information.

The computer can provide 'just-in-time information' Not just to avoid giving a patient a drug to which he is allergic. If there has been a change in practice the clinician needs to know about it. If there has been a new contraceptive pill scare a general practitioner wants to know of it, preferably before it is on the front page of a tabloid newspaper, or on the radio at breakfast time. The computer could help. Computers should enable healthcare professionals to have supported knowledge, better communications and better co-ordination of care. The use of computers starts to raise all sorts of interesting areas, such as quality assurance with the health record. Good quality depends on the right information getting in to the record at the start. There are then other pieces of information sent from other machines: the hospital and community systems. All sorts of systems that are just sitting on their own with locked-in information. If healthcare professionals can start mobilising all this information and adding it all up a true cradle to the grave record becomes possible.

Alison Young: So what are the information needs of the primary care clinicians and those across the whole gambit of secondary, community and primary care? We need an electronic health record. We need something that is instantly accessible to everybody at the time when that patient is present for treatment. It is no use saying I will go and get the records or I will get doctor X to fax it to me. The record may arrive in a couple of hours time, but it is not there at the point when it is needed.

When the clinician wants to make that important decision about the care to provide to a patient it would be useful to have expert advice. To be able to dial up to the expert and actually say "Please take a look at this rash presented by the patient in front of me, because I've never seen it before, have you?" Such telemedicine is already working in Wales and in other areas. In remote areas it means patients no longer have to travel to the hospital. Instead the hospital on a computer link travels to them.

Humans have got limited memories. With the best will in the world - we can only remember a certain portion of all that we have gleaned over the years of our experience. We also need to be triggered so that our memories are always the same even when tired at the end of a Friday afternoon, having just seen the 20th patient otherwise the standard of care is likely to deteriorate.

Reference information on drugs and prescribing changes so rapidly that, after having been out of nursing for only 18 months, I am already seeing unfamiliar drugs in my data conversion role. Using information all the time is one way of learning. Another is having the information available so that when somebody has been given an unfamiliar drug from secondary care the interaction can be checked. The nurse can reassess what is being prescribed for each patient. More nurses are talking through with patients their holistic care. Nurses can help patients to put forward to the doctor their points of view about their care.

Information about diseases can help a patient cope with a referral to hospital.

It can also help those in primary care check all the required test results and referral information goes with the patient. Completing the blood tests and the x-rays avoids the patient sitting around for days in hospital, filling a hospital bed when they could be at home. Such information can be stored in the computer and instantly accessible. I undertook a project for a long time looking at decision support . Recently at the 1996 Primary Health Care meeting in Cambridge it saddened me to hear people still saying what I was suggesting nearly four years ago. The changes have not yet happened although there is progress. My project was based at the Cochran Centre so I was able to see some of the evidence-based factors and some of the information that may soon be available. The Cochran Centre work is really exciting. The material provides healthcare professionals with a large range of education to keep clinical practice up-to-date.

Mike Bainbridge: As a general practitioner my experience clarifies my information needs. I need more information about more drugs, about more and new ways of treating diseases and clinical problems. Patients are now exposed to more information and are much more demanding. Quite rightly they expect general practitioners to know much more about disease and to make the correct diagnosis. At the same time there is too much complex and unstructured information coming through my letterbox. I get 27 medical journals a month. I also get 15 computer journals a month. It is just too much. Add that to my electronic mail, which runs about 60 messages a day, and I could actually use an entire 24 hours just trying to wade through the information.

At the moment, doctors have a lack of real-time help in consultations. There are programs available but they are not quite sophisticated enough. As Alison said we all came to this conclusion about four years ago and the situation is unchanged.

At the moment, according to my Public Health Department, protocols are very important. They are busy beavering away on a hypertension protocol, one for Diabetes, another for asthma. I suspect so are the other 95 Health Authorities in this country. The resulting protocols are not user friendly. They are very pretty and very glossy. I read them: there are lovely flow charts. I think "That is nice, I'll use that" and I put the protocol in my bottom drawer. And that is the end of it. If I am in a good mood, I might use it once or twice. But then I forget about it. I drop back into the old ways. I do not think I am unusual in this reaction. If protocols and that kind of physical support are going to be used, the information has to be available live, in front of the doctor and using information gleaned from the patient's notes.

Current information sources are generally paper based. There are obvious recall problems. For example you can not remember what you wrote, you can not read what you wrote either because you did not write it down in the first place or the notes are under the seat of your senior partner's car. The Lloyd George case-notes, designed in 1914, are not terribly useful now that they are about 2 inches thick. There are various ways to tackle such bulk -if you are obsessive enough as it is hard work and it is constant work.

Information competence is something that can be developed. However this is the way the problem was tackled in my practice. The senior partner made a decision "We need

a computer". In 1986 he went out and bought one. He went on a training course. He came back and said we are all using it - end of story.

Where is the ability to use the information going to come from? Why and how can we get sensible information into this computer if we do not know what it means. How do we get information to out again? The same problems as before with the Lloyd George notes in keeping up to date. Where is the data? How is it indexed? How is it searched? What if you do not know the right questions to ask? This latter problem is going to occur more often when version 3 of the Read Terms becomes available: there are many, many different ways of recording something simple. For a normal cervical smear there are five different ways of recording it, all valid, but all different concepts: the pathology result, a health promotion item etc. But if you enter the wrong data in the first place you are not going to get out the data required.

Alison Young: To the rescue comes the computer with its new technology. The companies that we represent have new, second generation, Windows based products. They are already out in the market place and are helping people to have speedy access and graphics. Healthcare professionals can now draw a picture instead of having to describe a problem in words. The picture can be stored in a way that can be instantly retrieved. The products can help the doctor find out which patient's husband phoned, in the middle of the night, and put the phone down too soon after he said his wife's name was Mavis and that she was going blue. The new systems make it possible to retrieve such information. They systems are sophisticated and connected to the NHS network. But is it sharing?

It may be sharing in the primary care, but are healthcare profesionals sharing information anywhere else? The systems are available now. There is e-mail working in practices that could not communicate before and now actually can. On the side of the screen the program it can leave a little message saying "Have you forgotten there is a practice meeting today?" The program can make sure that everybody knows what is going on within the practice and by sharing information about patients to make for better care.

Mike Bainbridge: What is more important, the program can prove the senior partner has actually seen the message and read it.

Alison Young: In general practice test results coming from the pathology laboratories and the x-ray department can be added straight into the patient record. This makes them accessible and readable. This eases the load on practice nurses. A survey showed that 97% of GPs in England have a computer that will, in the next couple of years, be capable of doing this. But will GPs use it? Will they have the telephone lines? Primary care is ready to communicate with the outside world.

Mike Bainbridge: This is where doctors have to start ducking.

Alison Young: This is where doctors put on the bullet proof vest.

There has been a huge investment in secondary care computing. But one Wessex-type scandal in hospital computing equals the whole investment in general practice computing. There are administration systems but they are not generally satisfactory. There are isolated pockets of good practice: clinical systems that seem to be achieving benefits. Achieving these health information targets should be important to a lot of

managers who have performance related pay. This is starting to happen. So there is hope.

Mike Bainbridge: I undertook a survey in Derby. I asked about electronic communications "What do you want from the hospital?" The number one answer was " Discharge summary". Not pathology results, not x-ray results, not requests - but discharge summaries. We all know that is an infrastructure problem. That it is an anchor the junior doctor with a ball and chain next to the teetering pile of notes for discharged patients until all the summaries have been dictated. Then trying to find a secretary to type them. It is not a technology problem. Hospitals need a full clinical system where, on pressing button 'B' a discharge summary appears on screen.

Early community-care systems also created problems. A health visitor in 1996 was given a computer system that had no bearing on her clinical care. It was a data sponge. It only wanted information. It caused her more work and to spend less time with clients but did not provide her with feed-back from the information she had entered. The system has no reporting facility available to the health visitor. I despair.

We think computing should be fun and quicker. For example the system set up to say " Good afternoon Dr Hayes - you have access to all areas." This example was created for Glynn Hayes. He was getting fed up with doing half-day surgeries, so as a birthday present we put added the message. It appeared as he logged in morning and afternoon. It said good morning or good afternoon Dr Hayes as appropriate. That made him feel much happier about using the computer.

Alison Young: Nurses have been talking about being able to give patients information and lifestyle advice leaflets. Paper copies have been on display. But it would be useful for the computer to print them out on the right-hand side of the prescription. This function is available now. The patient can then take information that is personal and relevant. It can be read at leisure when they are not so stressed. Patients can receive a huge flow of information during a consultation. They need time to think about it. Pictures would be even more useful. Sound may also be useful. It would be possible to have moving images.

Mike Bainbridge: The computer can also provide the textbook side of information. Work was done by the MacMorran brothers, they both got PhD's in science and then decided that they would go to medical school. They spent the first week at medical school with their mouths open, looking at the archaic way that medicine was taught. They decided that, instead of taking lecture notes, what they would do was to get their chums together, get them vetted by the professorial staff and produce a multi-media hypertext system. Their system now sits on my desktop next to my computing system - it is not currently integrated, but could be.

The system gives me a description, I can look at causes or find out how to diagnose a condition that is not one I would see very often. Also, more importantly, what can I do about it. It is a whole chunk of medicine in bite size pieces. For example I had someone in the other day from Wales and he had a funny looking thing on his finger. I had this dim thought in the back of my mind that this was orf. I had seen it ten years ago. Just looking at the computer system I was able to jog my memory, to find out what the clinical features were and tell him it was orf, caught from handling sheep. Doctors can include pictures in clinical records: a photograph of such a lesion could be added.

Alison Young: For nurses it would be useful to be able to take pictures of a patient's leg ulcers so that when your partner sees them in a couple of weeks time she will be able to compare the images and see exactly how much has changed. The same principle can be applied to ring-worm or other liesions. It would help confirm that effective care has been provided. Scales may be used to assess progress in treating depression. Sound might be used to record heart murmurs for comparison over time.

Mike Bainbridge: Education through computer use could become an interesting area for development. Books have already been put on computers. They could be linked to clinical systems. Imagine a child with croup at 03.00 hours on the second day of a GP training scheme but with no registrar available: a frightening situation. A computer system with illustrations that showed the bluing of the lips would be very helpful.

Is the computer-based decision support system ever going to be useful during a consultation? Most are from America and are very highly thought of there. The doctor enters general patient details, signs and symptoms. For example a man of a over 55 years with an occipital headache and jaundice plus a cough. The result might be a suggested diagnosis of yellow fever - unlikely in the UK. The computer is not doing anything wrong, but the data entered to create the program was from North American hospitals where this might well be a common diagnosis. It is a vicious circle: the only way we get data in primary care into the system is to use computer systems to collect the information. Doctors need to accept the problem of data collection in order to to move forward.

Alison Young: At the moment there are solutions available: computer systems that are able to deliver this kind of communication to each clinician's desk in primary care. Systems that will allow the preservation of the clinician/patient relationship. We cannot ignore the need for information to be timely and accessible, but the patients need to be able to discuss things in detail. Giving a printout of the information, so they can remember it and refer to it later.

What clinicians need is information competence. They need proper training an the tools that allow them to work smoothly and easily within their normal practice. Systems should not impose an extra burden. Time is short enough: clinicians do not want to have to code something after the patient has gone out the door. They want to be able to do it quickly and easily at the same time as talking to the patient. Such systems are coming very slowly within family care.

Mike Bainbridge: In summary, communicating in primary care is communicating in clinical care. It is about improving patient care. It is already happening. It is developing in the clinical systems, and it is already in the office automation systems that surround them. Communications are coming at healthcare from all angles. When it is available throughout the NHS then we will start to see the real benefits.

Questions and discussion

Christine Alison

Norwich Community Health Partnership

Just a word of comfort for the health visitor. Some community health care trusts are working around the information systems being useful to clinicians rather than collecting useless data.

Mike Bainbridge I'm glad to hear it.

Participant

Hillingdon Hospital, Uxbridge.

Just an observation, really about continuing your theme about collaboration. We have two companies here dealing with general practitioner systems. We have been in the situation where we are transmitting pathology results to a third system. The difficulty lies in a lack of standards. In being able to transmit those electronic messages in such a way that all users can pick them up and incorporate them into the patient record. W have like nine or ten different GP.practice systems overall.

My question is could you please report on what progress there is towards these standards and will there be the solutions to both of our problems?

Mike Bainbridge: There are two perspectives: one is strategic, the other is what is really happening. There are pathfinders and trailblazers. Trailblazers met to prove that the messaging service, the X-400 and the NHSnet actually worked. They were not terribly successful.For pathology and radiology messages there are Pathfinder Projects which are looking at the messaging in EDIFACT, which is like an envelope which wraps around the message. They are going on at the moment and are doing very, very well. But doctors expect to be heavily pressured by NHS Executive to use the NHSnet and X-400 to actually do it. They are currently just using the old RACEL system. The NHS Executive are working on proving separate parts will work in the hope they can put them together later.

In Southern Derbyshire the doctors said no more work will go on the old American standard system and no more practices will be put onto the old system. We will wait for the report of this project which should be later on this year. It is moving very fast.

Graham Wright: I want to make an observation, having just been involved in a study looking at information handling, information systems and strategy in a Trust. It strikes me over and over again that we are getting very different climates and cultures around information management and handling in general practice and coronary care compared with Trusts that are at the high, end of investment and technology.

One of the problems I see in the Trusts is in getting people to use the systems. There are no payoffs because there are currently no clinical benefits. Also a very high proportion of people have a rapid turnover in r jobs. They are there for very short periods of time and they say "Why should I bother learning about this Trust, because next week I'm going to be at another place." Whereas in primary care I would assume - once you invest in people and they understand the systems - they are going to be around for five or ten years.

Mike Bainbridge: I saw this develop once staff pulled out some very basic graphical information from the system: "How many diabetics did you see last week?" The data

was just about that ward/office, got updated and staff could see trends and paths. People started to own the information and it did something.

We did a diabetic project in Derby a little while back and again the most important bit was having the information reflected back to staff. It was illustrated on a little chart - showing you are here. Staff could where they were in the range of data entered for Derbyshire.

Mike Bainbridge We asked all the junior clinicians who took part in our study whether they have any idea what the information that they were collecting was used for and the answers are quite unprintable.