This month we interviewed Dr. Mohammad Al-Ubaydli, Founder and CEO of Patients Know Best, as part of the Ashoka Series.  Launched in July 2008, Patients Know Best is empowering 2.3 million patients by giving them domain over their medical records.  Patients Know Best helps not just the patient, but PBK also assists the healthcare provider and the general public through more accessible, high quality care.   We discussed how Patients Know Best is striving to be a socially minded, technological force as healthcare evolves; we also touched on how Dr. Mohammad Al Ubaydli’s own experiences led to him creating PBK.
Interview by Stephanie van de Werve, Communications and Marketing Manager at Aleron
Patients Know Best’ story

Aleron: Could you explain the Patients Know Best platform and functionality?

Mohammad: It is a patient controlled medical record like your doctor has in the hospital or GP central.  You, the patient, controls who gets access.  We started off this way because we wanted to be treated as patients, but it became apparent that this information was also very useful for the healthcare system.  The first thing the patient says is: “I want all of my doctors to look at my information.  I don’t want to repeat myself.  I don’t want you to not know something that is important for my safety.”  When the patient is in control, it allows the doctor to see everything, and that saves time and money.  This subsequently makes things safer for the patient.  Therefore, the patient makes the whole healthcare system better by being in trouble.

Aleron: Was your goal, at first, to create a system for everyone or specific patients?

Mohammad: I wanted it for me! That was all I cared about.  I was a patient with a rare disease.  When I would go see my doctor, he would panic because he wouldn’t know what to do.  So I would tell him what all the other doctors did.  Initially, I thought this was because I was a doctor myself, and they trusted me.  Sadly, it has nothing to do with that.  It is because I have a rare disease that is complicated to understand.

Aleron: What is it called?

Mohammad:  It is called Hyper IgM Syndrome.  You know how when you get vaccinated you form antibodies?  I can’t do that.  If you give me a vaccine, I either get the infection or don’t become immune.  The only reason they were reliant upon me, the patient, was because I was the one who had gone to all the appointments.  I was just paying attention.  I was seeing what everybody was doing to me, and then telling them what was going on.  I just thought if they gave me all the data they were writing down about me that would help me and help them.  But, what became apparent is that every person in the world needs that data, and we gradually discovered this need.  First of all, we started with rare diseases.  My disease is one in a million, but there are 13 million people in western Europe and the USA who have a rare disease.  In aggregate, rare diseases are very common.  Even common diseases which people think they understand like diabetes, which impacts 5% of the population, become complicated when every patient has a different combination of issues going on.  Let us say you have a patient who has diabetes plus asthma, the patient is living by themselves at home, and they are elderly.  You would still end up treating that patient as a unique, one a million kind of patient even though they have one or more common issues.  We went beyond that, people who are well and want to stay well.  You could just roll this out to everybody in the world.  In the beginning, I was thinking of me, and that turned out to be useful to everybody else.

Mohammad_Al_Ubaydli

Mohammad is founder and CEO of Patients Know Best and has over 15 years of experience in medical software. He 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. He is the author of seven books, including Personal health records: A guide for clinicians and Streamlining Hospital-Patient Communication: Developing High Impact Patient Portals. He is also an honourary senior research associate at UCL medical school for his research on patient-controlled medical records. In 2012 he was elected an Ashoka Fellow as a social entrepreneur for the contributions he has made to patient care.

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Follow Patients Know Best  on Twitter @patientsco and read more at Patientsknowbest.com

In Practice on the Ground

Aleron:  Is your ultimate goal is to reduce health care cost and improve care for all?

Mohammad:  Every social enterprise has a different destination for ‘change’; our goal is the patient having complete control of their own healthcare.  Now, that will cause systemic change throughout the world’s healthcare system.  When the patient is in control, he shares the data which reduces costs and increases safety.  That is a great thing, but this benefit is not why we do it.  When the patient is in control, he becomes empowered, and this is why we do it.  He starts paying attention to its own body.  He starts understanding their own health.  It is a bit like voting.  Countries that have voting are more efficient and have more money.  They are economically better, but that is not why they have voting.  You have voting because it is a human right.  When people vote, they become informed citizens.  They govern their country as citizens of that country, and that idea is really what social enterprise is all about.  We get paid by our customers because they think about saving money and efficiency, but we get up every day because the patient, the citizen, must be in control of their data.

Aleron:  What is the multi-stake holder approach?

Mohammad: When we started off, we were just thinking about the patient and the hospital.  It very quickly became apparent that the hospital would save the most if they brought in every other stake holder: the GP, the social worker, the family, and the patient.  It also became apparent that there were other stakeholders we weren’t thinking of who said, “We want to pay. If we put the patient in control, we start saving money or making money.”  Charities began doing this because they could get better care for their patients and members.  Farmer companies began funding it because it helps with their research.  We have local governments funding it because if they cover the whole population they structurally reduce their healthcare cost.   For instance, prisoners have very poor health and very poor health care, and that is partly because of very poor health records.  A single record that joins up the time period before they went to prison, during prison, across to any other prison they possibly moved to, and then back into the community is a huge deal in terms of cost savings.  These are some of the sickest and, in some cases, most infectious people in the population.  The prisons came to us, and I think it is a great thing to do.  Social workers, pharmacy chains and device manufacturers we meet with everyday say, “Actually, if the patient is in control, I can either save or make money, so I am going to pay to put the patient in control.”  This kicks out another cycle of change in the health care economy.

Aleron:  Is it how you are funded? People pay for your services?

Mohammad:  Usually, the institutions and the professionals fund for their usage, and they will get the most benefit if they sign up all their patients.  They start a chain reaction because they pay for the service for their staff, they give it free of charge to all their patients and they give it free of charge to other stakeholders.  Those stakeholders say this is great, and ask, “What is the cost for me to do it across my organization?”  That chain reaction just spreads from there.

Aleron: I saw something about online consultations.  You were saying that 50% of consultations could be done online.  Do you think this is the future of medicine?

Mohammad:  Yes!  Actually, I would say it is the present of medicine because it is already happening in many situations.  When you talk to the typical doctor, they will tell you that an online consultation is in poor relation to a face to face one, it is unsafe and inefficient.  We actually showed to our customers in many situations that it is better, not just cheaper.  First, the obvious thing, if you have a face to face appointment as a patient you have to take a half day at least.  This is assuming that you are not travelling a long distance to see a specialist.  In some cases, travelling to see your doctor makes you sicker.  If you are in a wheelchair or if you have a disability, the travel to see a specialist harms you as a patient.  Third, some diseases, such as cystic fibrosis, are contagious to other sufferers of the disease.  It is even dangerous for them to go to a cystic fibrosis clinic.  There are some things that you see in the patient’s home that you could never see in a clinic.  Imagine you are a psychiatrist treating somebody with depression.  If you can see in their home you can know if they got out of bed.  Did they get dressed?  Did they change their bedding?  Are they looking depressed in their home environment, or did they get dressed to see you at the clinic?  This information you can’t get otherwise.  There is a paper that came out last week from Peterborough.  If you have seizures as a child, you have to go to the hospital so somebody can witness the seizure and then declare that you have epilepsy.  So instead of bringing you in for two days, they decided to try PKB instead.  They talked to the parents, and they said, “You have a phone.  Your phone has a video camera.  Next time your child is having a seizure, take a video and sent it to us through PKB”.  Initially they did this to spare the family from having to spend time in a hospital.  It is very uncomfortable, especially for a sick child, to spend a long time in a hospital.  They also save the money from not having to spend two days in the hospital.  The paper concluded the quality of the diagnosis is higher if you use a video of the child at home instead of bringing them to the hospital because you can pause, replay, forward it to another specialists.  There is a lot of things you can do now online if you understand how to do it.

Aleron:  Do you have any major competitors?  I know Google was trying to do something similar with Google Health but weren’t successful.  Same with Microsoft Health.

Mohammad:  It is very sad to me that we don’t have many competitors.  It is annoying as a patient that I am not offered this approach by everybody in the world.  We still come across as being unusual instead of being the norm.  When I started in 2008, this was based off my work for the previous two years.  I had done research and written books on how to do this.  I spent a year convincing hospitals to use Microsoft Health Volt and Google Health.  I was begging them; I said, “I desperately need you to do this for me as a patient.  Please treat me correctly by doing this.”  And they weren’t doing it.  You had to operate as a social enterprise; you had to really go deeply with them on the ethos of what you are trying to do.  You had to explain why it is important for the patient to control data instead of allowing the hospitals to be threatened by it.  When you embrace those conversation with them, then there is a big cognitive shift or big change in how they think.  We went through that path, and as a result it is going now to scale in lots of places.  It still disappoints me that not everybody is picking this up, and we don’t have many competitors.

Aleron:  Is there a problem with data protection?

Mohammad:  So Microsoft and Google made three mistakes.  First, they went directly to the patient, the consumer.  About 1% of people, like me, get excited about Google Health and spend three hours putting all of data into Google Health.  They take it to the doctor, and the doctor says, “I do not care.  I am not going to do this with you.  This is a consumer application, and I am a professional.  I have to use my own medical record system.”  That approach failed, and the patient will never again do this.  The second aspect, which we focused on during development, revolves around engaging the professional.  Microsoft and the others built a Dropbox of sorts for you records, but you still needed to build Microsoft Word replacement on top of it.  Every hospital had to build their own version of what to do with the data on the inside.  It had become an IT project for them while we said, “We already have Microsoft Word.  You can just throw it at it straightaway.  Just sign here, and within two months we will get you up and running.  You have all the features you want where as Microsoft and Google expected you to build the thing on top of it.”  But, probably the biggest mistake they made was not encrypting the data.  Every record that we have, we sign a contract saying that the record is owned by the patient and not us.  This is a simple statement that Microsoft and Google do not say.  The record has a unique private key, and if you don’t have that private key, the information is a bunch of 1’s and 0’s.  Only the patient and others who the patient chooses can have access to the patient’s data, so we have no access to the private key and data.  Microsoft and Google spent ages telling people, “Trust us.  We will not misuse the data.”  We said, “Don’t trust us.  We cannot use the data.”  We operate as a social enterprise.  We don’t have the keys.”  The contract says the patient owns the data, and that gains peoples’ trust.  We can manage all of the information on the behalf of the patient in the most ethical way because of this trust.

Aleron: Here is a very hypothetical question.  What do you think the health care system will look like in 2015?

Mohammad: I do not know, and I cannot know.  But, I will say some trends that are coming through.  If you are very good or very local, you will be fine.  Everybody else is in trouble.

Aleron: What do you mean by local?

Mohammad: Local would be my GP who is right next to me or my supermarket that I go to every couple days that now provides a medical professional to me.  This is a complete disruption of the distribution of medical expertise.  The reason the supermarket doesn’t currently have a doctor who can look after you is that the supermarket cannot get to your medical record.  If you choose to carry your medical record and work with the bank or supermarket, then your GP or local hospital may be in trouble.  They can no longer rely upon being convenient because there are others who can be even more convenient.  What are you left with as a differentiator?  Being good at your job.  The best indicator of quality in health care is volume.  The surgeon who does an operation ten times as much as the other surgeon is ten times better than the other surgeon, frequently at half the price.  You will have super-specialists who are world class in what they do, and they will no longer have distance as a limit to how they can treat patients.  They can see their records in real time. They can do online consultations.  They have heart rate monitoring devices.  They have completely separated the delivery of expertise, the availability of data, and the patient needing to travel.

Aleron: Will they be able to perform surgery from remote places?

Mohammad:  They were doing this ten years ago.  I believe France was the first transatlantic operation; the robot was in New York and the surgeon was in Paris.  The limiting factor was costs associated with buildings robots.  They get cheaper as discussed in Moore’s law which states 1000x improvement every ten years.  Again, the more the data is shifted towards the patient, the more it is possible to disaggregate which allows the patient and doctor to be wherever they want to be. Then they can just work together.

Aleron:  If everybody owns their own data then there will not be a way to use the data and analyse it?  Could this be a problem?

Mohammad: Quite the opposite.  At the moment, data exists in institutions with limited permissions.  As a hospital, I probably don’t have your consent to use your data for analytics, I may do it without you knowing, but I won’t share it with other hospitals so we can pool our data.  At that point, it would be apparent to everybody that I am breaking the law.  So we just don’t pool our data.  Data, at the moment, exists at scale, but is still very fragmented.  However, if they just asked you, “Can we use your data for research,” 92% of PBK users would say yes!  We are finding that if the charity is the one asking, Cancer Research UK for example, people who call or use their website to look at their data for research purposes.  The patients say, “Yes, I would like you to cure my disease.  Here you go.”  The patient earning the data will liberate it from the institutional silos and distribute it because they want to work with researches, and they want their disease to be cured.

The Ashoka Fellowship

Aleron: When did you become an Ashoka Fellow?  How has it helped you and PKB in practice?

Mohammad:  2011 to 2012? I think it was 2011; it feels like a lifetime ago.  I knew Ashoka from many years before.  They used to have a podcast, and I always loved the people who they had on to speak.  I always thought that it would be amazing to meet an Ashoka fellow.  When somebody nominated me, I was a bit star struck and very pleased.  Personally, it was great.  In terms of being a social enterprise, it helped a lot with customers who were sensitive about giving us the data at scale.  It mattered a great deal to them that we were a social enterprise, and people like Ashoka had given us a thumbs up.  It was a just a different ethical way of sharing data opposed to a typical tech company which operates with different guiding missions.  They also introduced us to a lot of people such as fellow entrepreneurs and advisors.  Behind the scenes, they give a lot of advice on a variety of things.  It was back in 2008 that the first Ashoka employee I met, helpfully, told me that we could get social investors.  When we joined Ashoka formally, they gave us more advice.  This advice allowed us to raise investment from world-class venture capitalists who allowed us to scale and reach everybody in the world while maintaining, actually, embracing the mission of the company with the shareholders being completely in line with the project.

Aleron:  Do you measure your social impact?

Mohammad: We started off very crudely.  We only cared about how many people were in control of their record.  We have just gone past 10,000 this year, but the contract we signed in March will take us to 2.3 million records with one large city.  Having proved it on a small scale with 10,000 records, they decided to give us 2.3 million records that can go in the system.  Now we can start measuring more metrics.  The new, large deployment will be evaluated by measuring four metrics: patient outcomes, patient experience, physician experience and availability of data for research.  That is from their perspective.  From a provider perspective, this is how they are evaluating social impact.  Part of our work with the B-Corporation’s UK chapter was about getting consultation from them; what other metrics really enhance the idea of the citizen being in control beyond you are in control versus you are not in control?  That is our next stage.

Aleron:  Can anyone be a change maker?

Mohammad:  I know, first hand, anyone can be a change maker.  Often what is missing is permission and education.  I find it a bit sad that people often talk about entrepreneurs and the rest of the world.  If everybody knew they had permission, actually a duty, to change the world, because you can’t do it at scale without everybody doing their part.  I like that Ashoka for the last couple years has added a focus on teaching these ‘skills for change’ in primary school.  They are directly working with schools for the next generation to have the tools to be change makers.  I think this is just the next stage of human evolution; we will have whole entire societies to do that rather than just a few random, unusual individual

Ashoka is a non-profit organization dedicated to finding and fostering social entrepreneurs worldwide. Ashoka is the largest network of social entrepreneurs worldwide, with nearly 3,000 Ashoka Fellows in 70 countries putting their system changing ideas into practice on a global scale.
Founded by Bill Drayton in 1980, Ashoka has provided start-up financing, professional support services, and connections to a global network across the business and social sectors, and a platform for people dedicated to changing the world. Ashoka launched the field of social entrepreneurship and has activated multi-sector partners across the world who increasingly look to entrepreneurial talent and new ideas to solve social problems.

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