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.

I do not really get it - I register with PKB ....... and what happens next? Do they contact local hospitals/GP practice? What difference will I see? Do the practice and hospitals upload info, or is it just the info I put in? What do they think about the extra work? How do they know I have registered with PKB? How will it alter my care in practice?

I am desperate to get better care - for instance during a recent trip to A&E with AF, they could not find my recent echocardiogram but mentioned my knee x-ray - I have never had a knee x-ray! So if they input stuff, it could easily be the wrong stuff!

Tech question: How do I change email address when I can no longer access the old one I was registered with?

I've used it for 2 or 3 years. It was great at first as I have regular blood tests. I know my condition and I know what the results mean.
Suddenly the results are hidden for about 6 weeks. So frustrating because I suspect I'm the only one actually interested.

The easiest way is to ask the clinical team to change your address for you. If you would like our help with this, do contact [email protected]. I’m sorry it’s so tricky to do this; as you can imagine, keeping others from accessing your medical record requires security checks about your identity.

I am so sorry about your recent experiences. Truth is, one of the very reasons I set up PKB was so that you as a patient have full access to your medical record and can help bridge communication gaps like this.

We are on a journey to help support patients but are dependent on hospital partners so the service and access can vary region by region. Here's how it works:

If you get an invite from your local hospital or you come across PKB in the NHS App, you should definitely register. It means someone in your region will start releasing data soon; you will be able to access it through Patients Know Best, and over time we expect more data from more healthcare providers.

If not, you can still register for your own free account on patientsknowbest.com/register, but you will have to populate data in your record. In general, regardless of whether you use PKB, it is worth asking for a copy of your information every time you see a medical professional. Ask for a print-out of the test results, prescriptions, discharge letters etc because you need to have the accurate information for yourself and for the next clinician to see you.

You can enter the information from your print-outs into PKB if you want a single place to store your information online. It does require work from you, although it sounds from your experiences with the clinicians having the wrong information about you like it would save your time.

I appreciate your frustration! We know hospitals that release test results immediately make their patients happy. It’s one of the most popular features for patients because, as you say, you are highly interested in the results and you know what your condition means.

Unfortunately, sending and hiding are determined by the hospital, not PKB. Sometimes clinical teams ask for a delay so they can speak to you in the clinic first as they are concerned patients may worry about results without this context. We understand their perspective, but patients consistently say would rather know sooner to prepare for the conversation in the clinic.

Can I ask what hospital has switched to hiding your test results? It’s one of the biggest complaints we have from patients. Hospitals often hear the anxiety of clinicians who want delays, but they rarely hear the frustration of patients who suffer from delays. Feel free to send us a private message at [email protected] if you would prefer, and we can follow up separately.

Thank you everyone for coming and asking your questions. It has been really useful for me to understand both what your concerns are and your needs around safe, quick access to your data that we are trying to facilitate. hope for those of you who do not have this service yet, this will be available for you soon.

We are always looking for patient stories on how access to your medical information has helped you, or the dangers when this has not been available. It help us take the NHS on this data sharing journey with you.

If you did want to ask any follow up questions, or understand more about PKB/medical record access more generally, you can get hold of us and keep up to date with our news via:

1. Twitter - idiopathic or patientsco
2. Facebook https://www.facebook.com/patientsco
3. Support desk - [email protected]

Thanks a million, doc! Much appreciated! I understand how airtight my data is and I’m grateful for that (and it makes sense why updating an email address isn’t just a few simple taps on the keyboard). Thank you so so much for your explanation!

Can I ask what hospital has switched to hiding your test results? It’s one of the biggest complaints we have from patients. Hospitals often hear the anxiety of clinicians who want delays, but they rarely hear the frustration of patients who suffer from delays.

It's Northern Lincolnshire and Goole hospital trust.

Thank you so much to Mohammad for answering all the questions, and thank you all for joining!