At the end of March, BBC Radio 4 produced a five episode series called Health Visions to focus on the questions healthcare experts are asking that are changing healthcare. Starting from the role of the doctor to managing healthcare as a society, the BBC interviewed physicians, patients, executives, academics, social entrepreneurs and senior figures in the NHS to understand how healthcare is changing and how the term ‘health’ is evolving.
In case you missed it, we have all the episodes below.
March 30, 2015 – Do I Need the Doctor? (14 mins)
“The greatest single advance in medicine will not be some new drug or procedure but the increased ability for patients to care for themselves. Today that is what health policy is saying…”
March 31, 2015 – The Patient in Charge (14 mins)
“Patients want to be more in control… Patients Know Best or PKB is the world’s first patient-controlled online medical record system that is currently being used in 50 healthcare sites across the UK. It is a website in which each patient has a unique profile, a bit like Facebook, where all their medical data is stored. Dr. Mohammad Al-Ubaydli is the founder.
[Dr. Al-Ubaydli:] The main idea behind PKB is that you can have a record that can store all of your information and it lets you do useful things with your medical team. You can consult with them online; you don’t have to come to your specialist to receive help from your specialist; you can share the information with your local doctor, nurse, carers, and families so everyone can help you out with the parts of your health that you need help from. But the longer term idea behind Patients Know Best is that after you get this information, you begin to understand your own health, you begin to manage your own health, and then you are supporting your own team as well as being able to take care of yourself.”
April 1, 2015 – Wellness at Work (14 mins)
“The workplace has the potential to be a place to improve your health; it can be a place to promote your health, both physical and mental; and a place where you can improve what we often describe as well-being. Wellbeing is more than you physical health. It is that sense of being in a good place, of feeling good about ourselves and about the people around us…”
April 2, 2015 – Healthier Homes? (14 mins)
“Identify how we can reconnect [health and housing] to make it possible for people who are living longer and longer to live a full life in the community.”
April 3, 2015 – A Health-Creating Society (14 mins)
“NHS simply isn’t going to be sustainable into the future unless we do two big things. The first is to get really serious about preventing disease and promoting health… The second one is to help the NHS to transition from a hospital center and illness based system to a person centered and health based one with a different and lower cost in infrastructure…”
Full transcript of The Patient in Charge:
[Dr. Charles Alessi]: Hello. My name is Charles Alessi and I’ve been a GP for over 30 years. My father was also a GP. As I go about my work, I can’t help but notice that more and more patients are taking control of their health and healthcare – more than ever before. Patients regularly come to my surgery now with sheaths of internet printouts revealing their diagnosis and their suggestions for treatment. Some people are pushing further really attempting to do more about managing their own health. I think we can utilize this willingness to be in charge to create a better healthcare system for all of us and that is my vision.
Today we’re in a busy surgery and superficially things are largely the same since the advent of the NHS. People sitting, waiting to see the doctor, to seek advice, reassurance, treatment from their GP. It’s not that long ago that if I wanted to go on holiday i had to pop out on my lunch hour and find something called a travel agency. To pay money I had to physically go into a bank and join a queue in my local branch. People behind me and people in front of me were all waiting to carry out the simplest of transactions. And all that has largely disappeared swept up in the digital revolution.
People’s expectations are healthcare are changing at least as fast. And where one’s patients were satisfied, today they’re questioning, critical, curious and crucially much much better informed. As a result patients want to be are more in control. It would be wrong to say we have no choices in health. We have a right to choose a hospital and a surgeon. Though in practice this is only useful only a limited number of procedures. But is this enough? Inside the great national health machine, it often feels like we’re all held back by an assumption that the system knows best. That we have to fit within it rather than the other way around. I believe the days of the patients being subordinate to the great monolithic system are coming to an end with the advent of the empowered patient in control and knowing exactly what they need from the healthcare system. Those patients with their sheets of patient medical information are at the forefront of medical revolution. But there is one crucial piece of information I have currently that the patient does not. I can see and input into the patient’s entire medical record. The patient cannot do the same. Perhaps its time the patient can see and alter his or her own med record. Better still perhaps it’s time that the patient actually owned it.
Patients Know Best or PKB is the world’s first patient controlled online medical record system that is currently being used in 50 healthcare sites across the UK. It’s a website in which each patient has a unique profile, a bit like Facebook where all their medical data is stored. Dr. Mohammad Al-Ubaydli is the founder.
[Dr. Al-Ubaydli:] The main idea behind PKB is that you can have a record that can store all of your information and it lets you do useful things with your medical team. You can consult with them online; you don’t have to come to your specialist to receive help from your specialist; you can share the information with your local doctor, nurse, carers, and families so everyone can help you out with the parts of your health that you need help from. But the longer term idea behind Patients Know Best is that after you get this information, you begin to understand your own health, you begin to manage your own health, and then you are supporting your own team as well as being able to take care of yourself.
[Nancy]: My name is Nancy and I’m a patient of the intestinal failure unit at St. Mark’s hospital in Harrow. Due to my condition, I’m fed intravenously on artificial nutrition so I therefore require a lot of support from my local hospital, my gastro consultant and nutrition team. I manage myself at home. I’ve been using PKB approximately for about 3 years now. It’s a way for me to manage my medical results and medical care and notes myself from home and take control of the situation. I suffer from low potassium so I often have blood tests to check my potassium levels. So if I have a blood test, I go into PKB. I’ll see if it’s low or if it’s high then I’ll use this to identify how much more medication I need to take and if it’s significantly low then the hospital will also see it and let me know if I need to be admitted into the hospital to get more potassium. Alternatively I can also send a message to my doctor to ask if I should be taking more potassium so I’m able to manage my condition more at home rather than waiting for another doctor’s appointment or phoning constantly and not necessarily being able to get through. So it does help and it saves a lot of time and it helps me feel like I’m doing something myself.
[Dr. Simon Gabe]: My name is Dr. Simon Gabe and I’m a consultant gastroenterologist at St. Mark’s hospital in Harrow in London. So PKB is particularly good for our patient group, as patients are being looked after in a number of different places. There’s their GP, there’s us as a specialist hospital, and there’s often a local hospital and sometimes there may be another hospital somewhere else as well. We often manage that traditionally in the NHS by asking for copies of correspondence but this is a way of trying to bring it all together so that everything can be seen at once. I find it particularly helpful in that way.
So when I log into patients know best, I often log in directly from an email telling me that a patient has left me a message. I would be able to see what question the patient has but also because usually it’s not just me who’s being message, it’s other people on the team. I can see the responses for example from a nurse or on of the pharmacists from the team and i can add as well. It’s big change. The bit that I really find very difficult to swallow is that the patients notes are secret. They are guarded and they are confidential. Of course they need to be confidential, but they are even confidential for patients. They have to write , get permission to see their own notes. Whereas this turns it the other way around. Patients are very much in charge of their own notes and can allow which healthcare professional or who else wants to see them.
[Nancy]: When you suddenly get ill, all that control is taken away from you. You can’t control your health. As much as you may take your own medications you can’t control how your body functions. PKB has given me a little bit of that control back and I like the ability of being able to check my results and being in the know sometimes even before the doctors are in the know. It gives me bit of power.
[Dr. Charles Alessi]: While the internet is empowering patients, other forms of digital technology can do the same. For people who have a single long term conditions like diabetes, there are already smartphone apps which advise on how to alter your insulin dosage or even change your medication. All of this without having to go back and ask for permission. To some this may sound a somewhat scary scenario. Next, it will be robots diagnosing and treating our illnesses. But the use of technology is to empower. It isn’t to replace the doctor. It doesn’t mean that face to face human interaction forged over the long term is threatened. It’s just different and more tailored to the individual.
In Harrogate, Yorkshire, the first self care kidney dialysis unit in the country has just opened. Using this service, patients like Michael can manage their kidney disease and do their own dialysis themselves when it suits them.
[Dr. Paul Lapoi]: My name is Dr. Paul Lapoi and I’m one of the kidney consultants from York Hospital. I look after people with severe kidney failure and often prescribe chronic hemodialysis treatment. This treatment is a fairly restrictive and time consuming treatment which lasts for four hours three times a week. The traditional model is that patients would come to the hospital for this treatment on a rigid schedule. Here in Harrogate, we have a brand new unit, a self care unit where patients have a flexible schedule, which they can flex around their daily lives rather than on the dialysis schedule of the hospital.
[Andrew Kundiff]: My name is Andrew Kundiff and I’m a charge nurse at Harrogate Renal Unit. Once the patient is fully trained, they’ve got a card that opens the door, they’re able to come in, set up the machine, get on dialysis, get off dialysis and get on with their life.
[Michael Pole]: My name is Michael Pole and I’ve had kidney failure for a number of years. I have a full time job and having this facility here allows me to do my treatment around my work whereas before in the traditional way doing dialysis, I had to be quite rigid with the times.
[Andrew Kundiff]: So Michael is just attending to an alarm and the canister that provides the dialysis fluid just needs changing over. So sometimes an alarm will go off and he has to troubleshoot and determine if there any parameters on the machine that need to be altered to continue dialysis.
[Michael]: It was fairly easy to learn how to actually manipulate the machine and how to work it properly but should I run into any problems I know that I can contact any one of the nurses or Andrew who’s at the other end of the phone.
It’s very uplifting for me because now I have complete control of what I’m doing and I’m responsible for my particular treatment. I feel a lot healthier overall.
That noise tells me it’s time to come off of the dialysis machine. So here it goes. That’s it. Done.
That’s the end of dialysis for another day.
[Dr. Paul Lapoi]: So we see Michael doing his own treatment completely independently safely and concluded his treatment to the same standard that you would have had in the hospital dialysis unit. This just proves the point that patients can be trusted to take care of themselves in a complicated setting such as dialysis and this is breaking away from the mold of a traditional patriarchal method of doctors and nurses doing everything for the patient and the patients being a passive partner.
One of the most satisfying things about self care is that there’s been a massive cultural change in the way that staff members view patients. There’s a lot more healthier aspects for our patients. We treat our patients as individuals, we acknowledge a little bit more as to what goes on in their lives. We appreciate their experiences and we would like to do more for our patients.
[Dr. Charles Alessi]: I believe the current healthcare system is on the verge of a revolution that will make our current ways seem quaint as a horse and cart. Patients carrying their own medical record from practitioner to practitioner will demand care that is carried out in convenient places such as pharmacies or supermarkets. Procedures like chemotherapy and dialysis will be delivered in the community or at home not at a huge building we call a hospital. None of this will happen effortlessly. The change in the doctor from the person in charge to the person who accompanies the patient, an advocate, a mentor through lifelong illnesses will not be easy. No doubt there will be resistance to change in places and we will make some mistakes along the way. However, individuals are making the ultimate health choices right now. Deciding on a trip to the D clinic in Switzerland to end their lives in a way they deem is best for them. How can we not trust them with their own healthcare before they reach that painful and final choice? We will have come full circle and gone back to some ways of working, we have forgotten caring for the whole person not one ailing body part and really listening to what people want and need, not deciding we know better than they do, what is really best for them. Next time you’re in a hospital, take a note of the height of the bed. That’s fixed with one thing in mind. That’s designed to make medical examination and treatment by the doctor as easy as possible. In hospitals for older people in Japan, the height is adjustable. When the person is lying down, it automatically slowly drops low towards the floor to minimize the danger of accidentally falling out of bed and getting a fractured hip. There’s a button within easy reach to raise it to ease getting out. It’s a bed designed for the patient not for the doctor. We need more of that right through healthcare.