Guest article: Information Therapy

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Dr Aniruddha Malpani, MD, an IVF specialist (Malpani Infertility Clinic), is an ardent patient advocate. He is the founder of what he has dubbed the world’s largest free patient education library, HELP (Health Education Library for People) in Bombay, India; and has authored the book, How to Get the Best Medical Care. I invited him to write a guest article here to talk about Information Therapy; he believes healthcare is too important to be left completely up to the doctor and I found his ideas intriguing.

The reason the healthcare system today is sick is because it is so doctor-centric. The best way to heal the system is by putting patients at the center of it; and the most efficient way of doing this is by allowing patients to own their PHR – personal health records. The web allows us to provide everyone with a free PHR; and this is a major business opportunity, as healthcare undergoes a dramatic change over the next few years. PHRs are likely to be a major catalyst , because they will allow patients more control over the healthcare they receive. Patients are the largest untapped healthcare resource and armed with a PHR, they won’t feel so powerless any more !

For example, let’s see how much better a visit to your doctor could be if you had an online PHR.

One day before your appointment, you receive an automatic email reminder. You review your personal health records on the internet, and take a printout which summarises your past medical history and your medications. An intelligent program on the site asks you questions related to your headaches, which you can review and answer . It also guides you about what questions you need to ask your doctor, and you can print these out to take with you to your doctor. It also provides you with more information about headaches and self-management options.

During the consultation, in case you forget some minor detail, you can always refer to your records using your mobile.

At the end of the consultation, when your doctor enters your medical data in the clinic’s medical record ( EMR) system, because your personal health record ( PHR) is integrated with the clinic’s medical record management system, your PHR is also automatically updated. Your doctor prescribes your medications as well as your laboratory tests online, so that this is sent electronically to the lab and the pharmacist. You don’t need to go to the chemist or the lab – the lab and the chemist come to you ! The information is also electronically sent to your insurance company for billing and payment. Everything is done by the time you leave the clinic – the care is focused around you !

Why is the PHR so important ? To understand this, remember that to the IRS, you are your tax return; to your bank, you are your bank statement; and for the healthcare system, you are your medical record . At present, this is on paper, fragmented , all over the place ( in hospitals and clinics) and incomplete. ( Traditionally, the medical record consisted of the notes the doctors and nurses made about the patient when he was in hospital ). Today, the modern version is the EMR or electronic medical record). The medical record is a representation of the patient’s story – as seen from a medical perspective. ( This is a fallback of the old-fashioned biomedical viewpoint of the medical establishment, which treated all patients as “cases”).

However, ideally the health record should be the patient’s story – from the patient’s point of view ! A patient-owned health record ( which includes the patient’s personal views and social background as well) can enable a true partnership and collaboration between patient and doctor. Unfortunately, for most of us, our financial records are in better shape than our health records ! This is a sad state of affairs, and we can correct this by using technology intelligently to help patients to store their medical records on their personal website.

We all have a PHR – only the sad fact it that it is disorganized; incomplete; and most of it is tucked away in obscure corners of your brain. There are clever models for organizing this on paper , but doing it online is much more effective and efficient. There are many companies which offer online PHRs and there is a list at

How can we get enough patients to keep a PHR? We need to provide them clever incentives to do so ! We can use either a top-down approach ( for example, health insurance plans can require their subscribers to keep PHRs ; and provide a discount for those who do so faithfully ); or a bottom-up approach – by creating communities of empowered patients.

Patients will do this because they have so much at stake ! We can show them that keeping this record will help them to get better medical care. The message is simple – “ PHR = organised medical information = improved medical care “ . Patients own this information. Part can be secure, private, and confidential; part can be public ; and by allowing varying levels of access , portions can be shared with whomever they choose.

I feel a novel benefit of the PHR is that patients can add a lot of value to the healthcare system by Patient to Patient ( P2P) networking. This has never been tapped so far ! They can share their own experiences ( for example, patient diary as a blog ) for other patients. This will facilitiate Patient to Patient ( P2P) networking , as they share experiences and tips. “Experienced “ patients can act as mentors and email buddies. Patients can grade their doctors and hospitals ( using the review model ) and compare treatments ( This is an important form of social networking and building a powerful , organized community , in which patients can intelligently share information with each other and their doctors ( “social networking for patients”). This network will allow the building of bulletin Boards, virtual patient support groups, and patient advocacy. Patients can link to each other’s websites; and can allow others to comment on your record and provide advise and feedback as well ( if they so desire).

Information Therapy ( “ The right information to the right person at the right time to help make better health decisions”) can be powerful medicine.

What information do patients want ?

  • To choose doctors and treatments with good outcomes
  • To communicate effectively with doctors
  • To know what the doctor should do

Their PHR can help them do all this ! We all need information to make medical decisions. At present, most of us rely on our doctors to filter the relevant information and provide it to us in an actionable format, so we know what to do next This model works well when you have a good doctor. What if you have a bad doctor ? ( vested interest ? does not understand your perspective? Too busy ? who does not communicate ? incompetent ?) At present, information on the net is intimidating, confusing and unreliable. By providing this information through the PHR, we can make the information relevant to the patient’s needs ( customized; personalized; rated and screened for quality)

Many patients would also be converted to keeping PHRs because their doctors would request them to do so. A PHR can help doctors to provide much better care to their patients. It will make the doctor’s life a lot easier The doctor will be able to access all the information about the patient’s health in one place ! Because patients are better organized; and the doctor has easy access to all the relevant medical records, the doctor’s productivity will improve, and he will be able to see more patients, more efficiently. This is a type of PRM – Patient Relationship Management ! The PHR will also help doctors to see the patient as a complete person – not just a record ! Good medical records have also been proven to reduce medical errors, and this will help in risk management , and thus reduce the doctor’s medicolegal liability as well.

Today, the primary mode of communication between the doctor and patient is either :

  • telephone ( no documentation; miscommunication; doctor may not remember all your details, which you may not provide)
  • real world visits (at the clinic, with the waiting and the waste of time)

Both have problems ! They can be supplemented with secure messaging/email.

The doctor can instantly pull up your PHR when replying to emails ( PRM !); everything is documented, so there is no scope for errors; and it is much more productive and convenient. You no longer need to play phone tag; and you can interpret your doctor’s jargon and share his insights and advise with your community ( for their comments and feedback).

The major concerns with online PHRs today are privacy issues and security issues. As we get comfortable with doing financial transactions online and accessing our bank accounts through a website, patients will become comfortable with online PHRs too as we incorporate the same safeguards for these.


Shahid N. Shah

Shahid Shah is an internationally recognized enterprise software guru that specializes in digital health with an emphasis on e-health, EHR/EMR, big data, iOT, data interoperability, med device connectivity, and bioinformatics.