Webchat with Dr Mohammad Al-Ubaydli, CEO of Patients Know Best, on Friday 14th and Monday 17th of April

[NicolaDMumsnet]

Hello,

We’re delighted to announce a webchat with Dr Mohammad Al-Ubaydli, CEO of Patients Know Best. Mohammad trained as a physician at the University of Cambridge; worked as a staff scientist at the National Institutes of Health; and was a management consultant to US hospitals at The Advisory Board Company.

Patients Know Best is a personal health record company, founded and underpinned by the belief that patient access and ownership of health records can unlock the potential for greater health outcomes and experiences. The company's aim is for every person to have the ability to access their personal health record, control who can see it and use this information to manage their health and care.

The company and its mission was born out of Mohammad’s own experiences. As a child with a rare disease, Mohammad saw his mother often repeating his story and explaining his condition to the healthcare experts he routinely saw. These healthcare professionals relied on her, and eventually on him, to provide accurate information about his condition. So, like many patients, he therefore, became the ‘expert’ on his own health. From this experience, Mohammad understood that patients not only have the power to change their own health destinies but they also hold the key to a more sustainable and responsive healthcare system which better meets the needs and expectations of citizens.

With a bold aspiration to empower patients to ultimately ‘know best’ and backed with independent research to demonstrate the benefits of this approach, in 2008, Mohammad founded Patients Know Best. Today, Mohammad’s company supports patients in accessing 4 million lab results and 250,0000 appointments every week, as well as interacting with their healthcare services digitally.

Mohammad will be answering questions live on Friday 14th April at 11-1pm and on Monday 17th April at 11-12:30pm.

If you can’t join on either of those days, please leave your question here in advance.

Is the date right? March is in the past yet this post is 2 days old? @NicolaDMumsnet is the webchat tomorrow and Monday 17 April?

Hi @Dammitthisisshit thank you for flagging this mistake! The webchat is indeed tomorrow and next Monday.

I have looked at your website and confess I do not quite get it. Does my local practice/hospital have to agree and cooperate in all this? I frankly can't see my hopeless local rural GP practice dealing with this!

For instance, at the moment I am on a 6 monthly injection for osteoporosis and they cannot cope with it at all - it is me who has to remember it is due; me who has to book for the blood test needed beforehand; me who has to tell the nurse which boxes to tick on the lab forms; me who has to ring the pharmacy to make sure they order in the injection; me who has to make an appointment for the actual injection; me who has no idea at all whether a GP has looked at the blood results and OK'd the injection - the nurse giving it certainly does not know!

Would registering with your organisation have a useful impact on all this?

The NHS is in chaos - how can your organisation help patients in the midst of this?

Hi Mohammad, I would be interest to know if any of the independent research referenced in the post shows this is something that particularly affects women? - there have been loads of stories on MN over the years of doctors minimising women’s experiences or symptoms and I think giving women the info they need to seek diagnoses is really important. Do you think that’s something that your company does?

How much of the NHS does this cover? As @Mischance says above, it doesn't sound like the kind of thing my local surgery would be able to manage... How do you persuade them to sign up?

I signed up a long time ago and initially it was very useful, however over recent months I am notified of a result and it is it available for another month for me to view - pointless. Any "episodes" such as attending clinic or being admitted also seem pointless as it occurs as the event is taking place - no idea why this is relevant. The results are most irritating especially when it worked so well iniitally.

I have the app PatientView due to CKD, will I be changed over to this new app automatically or do I need to sign up. I’m in Scotland if that makes a difference.

Its always seemed to me that information sharing is something that the NHS is particularly bad at - do you have any sense of how we compare internationally? And are there organisations like yours in other health services across the developed world?

NHS organisations fund PKB because the more information a patient has, the better the care and the lower costs. So by registering when your local NHS invites you, you are helping your local team as well as helping yourself.

You’ve encountered this yourself already sadly as you are having to remind your clinicians about your tests and protocols. My mother did this for me, as a child with a rare disease, and I carried on, when they taught me how to take my own blood tests and do my own injections. When I see any doctor they panic as my illness is so rare and my care is so complex. It’s useful that I can give them a quick summary, and that I keep track of the details. In this way I can help them to help me.

If your organisation has not invited you to use PKB, you can still register free of charge if you want a place to keep your information. It takes a bit of work for you to have to write everything down, but you can save the time of your clinicians by doing so. Patients in England can register on www.patientsknowbest.com/register. 

I can’t speak objectively in general about women, but there are differences beyond the obvious reproductive biological ones. Women are more likely to get some immune illnesses (eg Lupus www.nhs.uk/conditions/lupus/)  and their symptoms of a heart attack can be different to how a man experiences and reports a heart attack (www.nhs.uk/conditions/heart-attack/symptoms/).

What I can say is that the human body is extremely complex. My specialty at university was immunology. One mystery was how a woman’s immune system can protect powerfully against foreign bodies, but shield and nurture the massive foreign body that is the baby in the womb. Women’s immune illnesses can change before, during and after pregnancy. There are many more mysteries for every human. This complexity makes medicine so beautiful but so hard.

It’s harder when clinical time is so short. Your doctor has to understand a lot, quickly, and interpret how it applies to you, personally. Many problems are lengthy and difficult to explain.

What PKB does is help the information exchange. The patient can track symptoms before an appointment so that PKB shows a clear chart of changes over time. It’s great if the patient can come prepared to the appointment with their story written down in the journal, especially summarised. That gets your thoughts in order for your discussion. Writing down the care plan your doctor is telling you during the appointment means you can remember what to do and other specialists can understand what they need to do for your situation.

Currently 30% of NHS Orgs have a contract that allows them to use PKB. However the roll outs have historically taken a while, and there are really strong pockets/particular organisations, but these tend to be hospitals, not GP. This is PKB’s job, on behalf of/with patients to get more NHS organisations using the contracts available to them.

The biggest complaints patients have are (1) missing data (2) inaccurate data and (3) delayed data.

This is personally frustrating for me as only your NHS controls what data you get. Clinicians are often worried about accuracy so their first instinct is to delay or refuse release.

Our daily work is to give more data to more people more quickly. We release 18 million test results a month to patients. The vast majority get instant access. We get there by helping the clinicians with the right protocols within their limited time.

What I will say is that even delayed or inaccurate data is useful to you. Eventual access to data means you have a history of your past care which makes future care safer. And knowing about inaccuracies in your record means you can ask for corrections which increase safety.

Finally, if you are missing data in your record, let your doctor know it matters to you. They care that you care.

Scotland will be completing the switchover from PatientView to PKB in the next few weeks. PatientView will continue to receive data until the switchover is completed.

With regards to you moving from PatientView to PKB - your kidney centre(s) in Scotland will email you a registration link. When this arrives, click the link and complete registration. You will then be able to access your PKB record.

It is important that your kidney centre has a current email for you, so please do send them it if you feel it might be out of date.

When you open up your PKB record after registering, you should be able to see all of the previous data that was in PatientView. You will receive new data such as test results as they are taken.

If you have any further queries before registration, please contact [email protected] and our team will be happy to help.

As much as the NHS struggles, the core problem is specialisation, which is present in all modern medicine. The advances in medicine come from specialists who know more and more about less and less of a patient. Specialisation advances healthcare but it also makes information exchange ever more complex and necessary.

Actually other countries have further difficulty, financially, as specialists do not always want to share information to protect their income. The NHS is free at the point of care, and they have an incentive to share information across specialists. This was the reason I started PKB in the UK, with the NHS, after my work and research in the USA.

What this means for a patient and their family is that they become the integrator, helping to join up conversations between specialists. That’s why I created PKB to help do that more easily.

This is really interesting - may I ask are there particular geographic concentrations? Does it tend to be more rural/urban pockets? And do you have any insight into what makes NHS orgs sign up?

Regarding your second question about other organisations… there are many others who want to help patients by giving them information, that’s been going on before computers, with maternity paper notes that the mum carries for example.

We are the only ones who focused on the patient. Others have focused on an individual organisation (the hospital or the GP surgery releasing data); or the condition (kidney or pregnancy); or collecting data from the patient (separate from what the clinician is writing). Each of these approaches is trying to help the patient. But each of these creates a new silo of data.

We wanted to make a single record, for all the patient’s life, wherever they live. NHS and non-NHS, UK and abroad, with data from the patient and about the patient for the patient. This is our vision and a long journey of course, but it means that today we are the largest personal health records organisation in Europe.

Why are some hospital test results published but many not? Also I've recently found out that my GP surgery has no access to blood test results and vice versa, surely this is dangerous. In my own case I have blood tests in my GP surgery every three months for an ongoing life long condition. I was still having blood tests at these intervals but unbeknownst to me someone changed what was being tested for.
The hospital assumed my Haemoglobin was being tested every three months. (this had been requested in 2016) and the GP's surgery had changed this to yearly. I almost died as a result. My Hb was at 3 and I needed several units of blood. This was only picked up in a routine pre-op blood test.

If this is taken up more widely by the NHS, what happens to patients who are too unwell to manage their own data? Will there be more NHS resources freed up to help those who need it most, or as with so many things will this move actually result in less NHS infrastructure and less help for those most in need.

I also wonder about the security/privacy risks of placing these records in the hands of a private organisation. Is PKB non-profit?

We do definitely see that a forward thinking hospital tends to lead the way, then their wider regions/neighbours follow (the network effect). Currently some of that really good coverage is in London, Sussex, Humber and North Yorkshire, West Yorkshire, Nottinghamshire, Staffordshire and Essex - to name a few. The full list is at https://manual.patientsknowbest.com/patient/nhsapp#h.lt3tt0b6wq3n.

So quite different pockets/with very different demographics, economies etc.

What they all have in common is a ‘problem’ that a patient or citizen can help them address. Sometimes there are commonalities regardless of their geographic differences, for example everyone is struggling with capacity. So they welcome anything that can help the NHS better support people who are waiting for treatment, or that can support those undergoing treatment to get the best possible outcomes in the most efficient ways. These really unite many programmes.

In addition, there are then locally-specific problems, for example how to engage a more rural community where travel can be problematic, or metropolitan regions with multiple languages.

I agree with you that the lack of information sharing is dangerous. Society will look back on this in 10 years time and ask “how did we accept practicing medicine in this way”? The first doctor to use PKB was treating children with complex severe conditions, she worried about the care they got in any local emergency department as the local doctors faxed her for information. A few years later I met the CEO of a hospital who was visibly upset that a child had died in their emergency department waiting for the fax back from the specialist paediatrician.

Sharing information, including with the patient has to happen. And it will.

Meanwhile, the lack of sharing comes down to a few reasons:

1. Some doctors are still very nervous about doing so, as they are anxious their patients would become anxious, and that this increases everyone’s work.
2. Clinicians need the help of their technical colleagues. They need internal resources to release this data safely and securely.
3. There needs to be funding for a third party (such as PKB) that is secure and patient-friendly.

Many organisations are making great progress on the above, but it unfortunately takes take to make sure everything that needs to be in place is in place - and this is one of our biggest jobs, to advocate for this on behalf of patients, and support the NHS organisations in being able to achieve this.

This does free up resources for those who can’t look after themselves. When my nurse taught me how to inject myself, it was brilliant for me, but it also meant I was no longer taking up a hospital bed to receive my injections. The same thing with information about how to look after yourself as well as record and share information with your care teams. This all saves valuable time for clinicians to focus on others in need.

But also, you don’t have to use PKB to use PKB. In other words, even if you can’t log in to see your information, other people looking after you can do so on your behalf. You can securely give family members access (or ask your clinicians to give them access on your behalf). And your clinical team can get access, either from you manually giving approval, or automatically if they have integrated with PKB as a customer.

You are right to think about the security of the records - this has been at the core of what I wanted to build with PKB, that the platform is secure and the company is trusted.

We are a private company. We get paid to hold the data securely for you and the people looking after you. Legally we cannot see your data or do anything with it. Nor do we want to. We just want to provide an easy way for you to understand and engage in your health management.

This is part of our mission (https://patientsknowbest.com/mission/) as a social enterprise. We were one of the first UK companies to certify as a B Corp (https://patientsknowbest.com/bcorp/), and this is the third year running we are in the top 10% globally for governance.

Thanks very much for your questions everyone! I’ve enjoyed reading them, and you’ve been very welcoming. I hope my answers were helpful.

I’ll be back again on Monday, so do post any questions over the weekend or join me live on Monday at 11 am.