BBC Healthy Visions Series

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. Continue reading

PKB and Leicester: Next Generation Medical Training

It’s well known that medical students train rigorously through case studies. The most rigorous training comes to them in their later years where they participate in hospital rounds or simulators that interactively drill them. However, this type of interactive and virtual education has now been piloted to medical students earlier in their training.  Leicester Medical School has teamed up with PKB (Patients Know Best) to build a unique training program that reflects the current trends and expectations of future generation of patients and physicians.

Speaking at the Royal Society of Medicine, both PKB CEO Dr. Mohammad Al-Ubaydli and Leicester innovation team leader Dr. Ron Hsu reflected upon the development of the tool, along with the lessons and observations learned along the way. For their full commentary, you can view the entire session here. Continue reading

Telegraph Interview: Do Patients Know Best?

Modern medicine is built on specialisation and as the patient goes from GP to specialist to care takers and back to GP, information travels in pieces, often times in the post, and most significantly separate from the patient. As PKB’s CEO Dr. Mohammad Al-Ubaydli tells Telegraph “patients are best placed to be in control of their medical records, because they are the only ones who have been to all the consultations.”

So what does it look like if patients were given access to their records? Continue reading

PKB now integrates with 100 devices and apps

This morning we have added lots more devices and app integrations into your PKB account. You can now automatically upload your weight using a Vitadock pair of scales; track your heart rate using a Withings pulse; monitor your blood oxygen levels using iHealthbeat‘s oximeter; upload your glucose measurements using your iPhone. All these devices are available from your local pharmacy chain or on Amazon for $100-200.

And your doctor will love you for providing these data because they need the data accurately and urgently to give you accurate timely advice about how to change your treatment without making you travel all the way to the hospital. Paper diaries are no good for this. Not only are they difficult and late to analyse for clinicians, but they are also known as “car park diaries” because patients fill them out in the car park just before the appointment. Paper is inconvenient for everyone, while these devices will automatically and instantly upload the data.

Continue reading

The other side of Healthcare: PKB and Clinical Research

Patients Know Best (PKB) is helping to bridge a critical gap in the healthcare system by allowing patients to work directly with research teams. From the beginning at Great Ormond Street Hospital the patient, the care-giver and the clinician were using the PKB system to bring their information and views to clinical decisions. Now, researchers are starting to use patient-control to facilitate research.

Today in the United States, we are working with talented groups who share this view in connecting all those parties together. The focus is on Inflammatory Bowel Diseases (IBD), complex diseases that affect approximately 1.2 million individuals in the US. Crohns and Colitis Foundation of America (CCFA), a nonprofit, volunteer driven organization, has been at the forefront of IBD research. Other partners that we are working with include, a global network of patients with Crohn’s Disease that provides real time data, Validic, a mobile health company that provides a platform for the integration of mobile health devices, UNC School of Medicine, and White River Computing, a data analytics and integration company, and a selected governance group of engaged and knowledgeable IBD patients. The health data network that we will build together is supported by and included in the overall Patient-Centered Outcomes Research Institute (PCORI) here in the US. We encourage you to click on their sites for more information.

This project is based on a mechanism of research that is patient-centered. These are the following goals(press release):

  • Enhance the network expansion, diversity, and retention of CCFA Partners participants
  • Build a robust network community, including patient governance structures that allow greater involvement of patients in research
  • Expand the CCFA Partners database to include electronic health records, data from health apps and devices, and biological samples
  • Create a customized, yet scalable and adaptable, distributed data network (i.e. virtual database) by repurposing NASA-built technology
  • Develop and test patient- and provider-focused tools that utilize individual patient data to improve health behaviors, healthcare decisions and outcomes
  • Further engage the scientific community through open collaboration and data sharing
  • Rapidly disseminate new knowledge to patients, enabling them to improve their health

Patients are no longer on the sidelines of their own health, diseases, and now clinical research. While PKB will start with IBD with CCFA, the bigger picture is for this network to integrate with the rest of the National Patient-Centered National Clinical Research Network (PCORnet), which aims

to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs and make it easier to launch new studies. It will focus research on questions and outcomes useful to patients and those who care for them.


EDRIC uses PKB to help Thalidomide beneficiaries across Europe

All EU patients are entitled to cross-border healthcare. However, there are difficulties with bureaucracy (the physician must treat using what is covered by the patient’s country, not the physician’s country); technology (there have previously been no truly cross-border medical records systems); and privacy (no system had previously complied with the EU’s data protection act across all countries).

Through our work with EDRIC, things are about to get easier for patients and clinicians. The European Dysmelia Reference Information Centre is a Swedish non-profit helping patients across Europe. Dysmelia is a generic term for a group of extremely rare conditions, for example Thalidomide syndrome, Poland syndrome and Polydactyly. This European partnership builds on our previous work with the UK’s Thalidomide Trust.

It is also part of PKB’s work with a series of rare disease cohorts, including St Mary’s Hospital’s neurofibromatosis unit, Alkaptonuria Society’s work with the Royal Liverpool University Hospital, and the Rare Genomics Institute’s work in the USA.

By working with EDRIC, PKB will be used across 12 European countries, and integrated with institutions such as Sweden’s Ex-Center. The latter is one of the world’s top orthopedic institutions.

Below is the full press release.

Patients Know Best (PKB) has teamed up with EDRIC, a European-wide membership organisation for people with Dysmelia – congenital limb differences – to help Dysmelia patients obtain the very best care wherever they live in the European Union (EU).

Using Patients Know Best – the world’s first fully patient-controlled electronic medical records system – EDRIC will help doctors comply with the patients’ country of origin requirements. Patients Know Best will host the medical records across countries and the patient control technology of the system complies with EU legislation – for the first time.

The partnership will facilitate patient access to the most knowledgeable clinicians in Europe’s top Dysmelia centres of excellence – such as Sweden’s Ex Center, a world-renowned centre for rehabilitation and information. EDRIC will also help patients to navigate complex EU insurance and legal requirements to enable cross border health care in order to obtain the best possible clinical services.

Through Patients Know Best, EDRIC captures the often highly complex nature of a Dysmelia patient’s medical history and makes it far simpler for attending clinicians located anywhere in Europe to quickly understand the interrelated nature of a patient’s health problems – improving diagnosis and treatment.

Tobias Arndt, chief operating officer of EDRIC said: “Our partnership with Patients Know Best is very important as for the first time, it will give patients with rare conditions like Dysmelia access to the very best clinicians in the very best hospitals – regardless of where they live in the EU.“

“Our members often have complex, interrelated health care needs that are often too difficult for local doctors and single specialist clinicians to tackle. Through providing clinicians with more relevant and detailed information about a patient’s medical history, we hope this new partnership will help our members help themselves to better health and better lives.”

Operating like a ‘secure Facebook’, Patients Know Best integrates fully into any medical records system, including the NHS secure network, and is available for use by any patient with any clinician anywhere in the world.  The Patients Know Best-based system enables Dysmelia patients to contact specialist doctors anywhere in Europe through a secure messaging system and ensures that a patient’s different specialist clinical teams – of which there can be many – have a single view of their medical history.

Dr Mohammad Al-Ubaydli, founder and CEO of Patients Know Best said:

“Whilst all EU patients are entitled to cross-border healthcare, so far there have been many difficulties with bureaucracy, IT and privacy. The doctor must treat using what is covered by the patient’s country – not the doctor’s country – and until Patients Know Best, there has been no way to share patient records between countries and no system which has complied with the EU’s data protection act. Our partnership with EDRIC overcomes these challenges for the first time.”

Patients Know Best has already been translated into Dutch, Spanish and German by UMC St Radboud. Working with EDRIC, the system will also be translated into Swedish, Italian and French.

Using PKB, Leicester Medical School becomes first in the UK teaching electronic consultations

1953 was a historic year: Elizabeth was crowned Queen; Hillary and Tenzing were first to climb mount Everest; Stalin died; and Watson and Crick published a short paper explaining the structure of DNA. Unlike the first three events, few members of the press attended Watson and Crick’s press conference, and the paper received by far the least publicity. For a few months, few paid attention, and fewer still understood the seminal importance of the paper. This is how the genomics revolution started: quietly.

60 years on, I have a similar feeling about October 4th 2013, when Leicester Medical School became the first in the UK to teach online consultations. (I believe they are the first in the world to do this, but they are academics, so they humbly limit the scope of their statements.) All its first year medical students are trained how to hold consultations online with virtual patients.

The biggest barrier to doctors conducting online consultations is that no one taught them how to do so. Although many doctors asked in public about online consultations, voicing concerns about patient safety and demands on time, the real reason is that no one taught them how to consult online safely and efficiently. As I wrote in The Guardian, we know that online consultations work. And as Action for ME showed in its public consultation with members, we know that patients want online consultations. So what remains is to teach tomorrow’s doctors.

Which makes Leicester’s course a historic one, and why we are proud to make Patients Know Best available to help train their students. As part of our work together, we will create a curriculum and make it available to other medical schools through an open access licence. If you would like to use PKB to teach your students how to consult online, contact us.