Tute Genomics and Patients Know Best partner to bring ‘precision-medicine’ a step closer

We are excited to announce our new partnership with Tute Genomics, which will allow Patients Know Best (PKB) users to receive a full profile of all genetic data in their medical record. Thus, PKB users will be able to receive healthcare services precision-made for their particular condition, based on analysis of their individual genome sequence.

We started thinking about this when Rare Genomics staff uploaded into PKB the full genome and exome sequences of the patients they were looking after. This allowed the local clinicians looking after each child to have access to the genome and to understand better the child’s rare disease.

PKB wanted the patients and their families to also understand the meaning of these genetic sequences. It was wonderful to see a demonstration of Tute; their software is used by genetic counsellors, who are professionals in understanding genomes. It turned out that Tute’s team were also thinking about putting their tools in the hands of patients. And like PKB they loved the power of a REST API for fast integration.

The power of genomics goes beyond rare diseases. For example, not all women with breast cancer respond to chemotherapy because some lack the right gene alleles. Identifying the women who will not respond spares them the chemotherapy. Identifying carrier status in parents is important for cystic fibrosis in Ireland and for other familial diseases in the Middle East. Antibiotics like gentamicin are avoided because deafness is a rare side effect. However, this side effect is much more common in carriers of certain gene alleles. Knowing the carrier status means avoiding the antibiotic for those with a high risk, whilst also using the antibiotic to help those patients at a much lower risk of damage to hearing.

Such understanding is just the beginning of what genomics will deliver. The cost of sequencing genes is dropping even faster than the cost of computing power. That’s better than half the cost every 18 months, and better than 1,000th the cost every 15 years. Furthermore, the quality of analysis is improving at a similar rate. For all these reasons, Tute and PKB are delighted to put such analysis in the hands of all patients as cheap sequences become commonly available to all patients.

The full press release can be found below.


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PKB collaborates with four universities to bring e-consultations to clinical curriculums

Three universities have followed the lead of Leicester Medical School to include a course on teaching the principles of online consultations using the Patients Know Best (PKB) platform. This is due to the success of the pilot led by Dr. Ron Hsu and his innovation team at Leicester. The complete evaluation of the program was featured in a Q&A session at the Royal Society of Medicine back in March. The session was recorded and is well worth watching:

These medical and pharmaceutical schools are taking the steps to prepare medical students for the future. In his interview with NHE, Dr. Ron Hsu reasoned that:

I’m not preparing students to be doctors today – I’m preparing them to be doctors in the next decade.

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Delphi Medical and PKB roll out patient-controlled records to substance misuse patients

Starting this month, Delphi Medical, the leading independent provider of drug and alcohol treatment in the UK, will be offering Patients Know Best to new and existing patients. This exciting announcement is a great example of patients benefiting from control of their records in a fragmented system. You can find the entire press release below.

Delphi Logo Patients Know Best



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Think Ahead: Online Version in Partnership with PKB

Yesterday, Ireland’s Think Ahead initiative launched phase two of their program that encourages people to plan for their end of life. We are proud to announce that Patients Know Best (PKB) is part of that initiative to bring patients a digital version to their patient medical records.

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PKB and Our Partners: Finalists for 2 EHI Awards

We are excited to announce that Patients Know Best has been shortlisted with our partners in two categories as Finalists for the EHI Awards. PKB was selected with our partner Quality Practice as finalists in the EHI Awards Best Use of Technology to Share Information with Patients and Carers category. We have also been selected with another partner Luton and Dunstable IBD team as finalists in the EHI Awards Best Use of IT to support Healthcare Business Efficiency category.

EHI_Finalist_Logo_2014This is exciting for us as EHI awards is one of the largest industry awards in the UK. The winners of these categories will be announced at the EHI Awards 2014, in association with CGI. Continue reading

NHE: Online Consultations – the future?

Dr. Ron Hsu said recently in his interview with NHE:

I liked the concept that we could have something that would actually demonstrate that the patient could be in charge. Mohammad’s idea, which I think is absolutely correct, is that if you empower the patient to know what’s going on, and to control who gets access to what, they get ownership. That is the moral argument; but there’s also the practical argument – they become the co-­ordinator, and can spot when things are going wrong.

That concept Dr. Hsu is talking about is the program that Leicester University Medical School piloted to teach first year medical students the principle of online consultations. To read about their reflections on the result of this pilot, please see our blog from last month, Next Generation Medical Training with PKB. Continue reading