Our society still hasn’t yet evolved enough to give HIV patients the dignity they deserve. So when Mr Aggarwal was diagnosed with this disease, he felt lonely, depressed, and shunned by society. His doctor suggested that he join an online community where other HIV patients were sailing in the same boat. Days after ‘going online’, Mr Aggarwal is a changed man, thanks to all the healthy group discussions and success stories of treatment. He has come to terms with his illness, feels positive about treatment, and most importantly, knows that he is not alone.
Information about the patient is the lifeblood of medicine. Modern technology has enabled new ways in which we store and share this information for many to use, reuse, improve and share some more.
In this day and age of the Internet, mobile phones and social media, patients are empowered with the possibility of real-time communication, 24/7 access to information, and live community feedback. Today’s patients have been exposed to numerous avenues besides the ones which our forefathers were aware of. Such exposure has empowered this generation of patients to ask for better care, better facilities, cheaper alternatives, and more useful ways of using technology to provide healthcare as well as healthcare information. However, in spite of large amounts of information being available today, a big problem that exists is that the information is not necessarily usable when and where it is most needed.
To effectively facilitate Information Therapy, Information Technology must bring about a marriage of ideas with utility; IT has to ensure that all the players of this ecosystem come together to improve information management for the benefit of the patient, healthcare professionals, and decision-makers throughout the healthcare sector. Only then can Information Therapy be provided to various participants of the healthcare ecosystem through the different stages of an illness:
• Diagnosis and information gathering
• Finding a provider
• Soliciting a second opinion
• Accepting a diagnosis
• Participation in research
• Being a patient advocate
For technology to be truly successful, there should be sustained focus on the different avenues of Information Therapy.
We explore 5 avenues with roadmaps below:
Avenue 1: Medical information sources
IT vendors must work at creating patient-friendly reliable trustworthy healthcare and medical information databases. These can be about medicines, diagnostics, decision trees, side effects, precautions, etc. A great example of this is the Healthwise Knowledgebase at http://healthwise.healthlibrary.com.
Technology should evolve to allow for more effective ways for updating information in such knowledge bases and wikis are a good model. These could be based on curation, criticism and collaboration to ensure that it is self-adjusting, effective and patient-centered. Advances in social technology will provide new ways for spreading this information, and innovation in delivery mechanisms will facilitate easier ways for people to consume this information.
This will help in:
• Creating informed patients
• Creating valued sources
• Ensuring poor sources are filtered and discarded
Avenue 2: Digital Identities for healthcare providers and provider information sources
The logical first step in creating rich databanks of provider information is to create identities for providers in the electronic world. The simplest way to do this is to create websites for doctors, clinics, and hospitals. This may not necessarily be individual websites for those who don’t want to invest in one, but simpler, informative, single web pages that fulfill the purpose of creating an identity for them.
Such websites can be optimized to convey services, location and contact information, medical notes, special cases treated, and the like. Such optimization will help in disseminating useful provider information to people looking for the same. This isn’t advertising, it’s a service: people today face many choices and are hampered by lack of information. Improving their ability to find information quickly is beneficial to them.
Technology vendors must provide easier ways for provider information to be located and searched, and this should be available through different types of media. They must:
• Create searchable directories of doctors and hospitals and other healthcare providers.
• The directories should allow users to grade and provide feedback about the healthcare providers they have interacted with, in a controlled environment.
Avenue 3: Patient-doctor communication
True engagement comes about through two-way, mutually-beneficial conversations. Technology must create multiple ways to facilitate both formal and informal patient-provider communication. The telephone made a huge impact on the way we communicate, and so did email. Newer technologies must be used to offer ease of use, larger acceptance and lower costs. Many providers today communicate with their patients using Skype, Google chat and even Facebook. Technology must build on such success stories while also allowing patients to protect their privacy and confidentiality.
Avenue 4: Health Information Exchanges
Technology vendors must work together to create Health Information Exchanges (HIEs) based on interlinking of electronic medical records, electronic health records, laboratory data and patient health records across providers and patients. This helps in:
• Providing patients with the option to switch doctors easily
• Allowing doctors to easily refer patients to other doctors for a second opinion
• Enabling direct access to laboratory data for physicians
The creation of a huge databank of medical data including symptoms, diagnostics and prescriptions (in which the data is ‘anonymised’ to protect patient privacy) can help to improve the cost-effective delivery of effective medical care and promote evidence-based medicine. HIEs must be designed to allow innovators to be able to create novel ways of using and sharing the vast volume of data within HIEs as long as patient and provider confidentiality is not compromised.
A major roadblock in Health Exchanges is that data is stored by various knowledge bases, EMR and EHR vendors and portals in their own formats. Devices also use divergent technology to record and store information. But as with Imaging and the DICOM compatibility norms, new standards such as HL7 and CCR are breaking down barriers for exchange of data in healthcare information, to allow data to flow smoothly.
Avenue 5: Online health communities
For years, patients have liked to work in groups, to support each other, to help themselves cope with illnesses which their near and dear ones don’t understand, and to seek advice from others who have similar ailments. Bringing people together in collaborative dialogue to explore social conditions that are the major influences of health and illness generates deeper collective awareness and community-driven action. Since individuals don’t see their lives partitioned into online and offline worlds, online communities should be given as much value as offline ones. A variety of online communities must come up for connecting patients quickly and privately with others who share similar health experiences.
Technology for creating online communities allows just about anyone to set up an online community, replete with video and audio chats, whiteboarding, discussion forums and bulletin boards. This enables the creation of an integrated digital ecosystem which simultaneously addresses both individual and social dimensions of health. It also allows patients to engage with each other and involves providers too.
Case Studies showcasing IT providing effective Information Therapy using the avenues discussed above:
• A hospital website provides emergency response numbers which earlier would only be found in a phone book. This improves the delivery of emergency medicine by providing real-time information through e-health channels.
• A gynecologist’s website allows a patient to calculate her schedule for check-ups and ultrasound visits and set reminders for the same. Earlier, she would have to get it written down by the doctor; now all she needs to do is log on to her trusted doctor’s website and check the dates herself. E-Health helps people plan their long term healthcare through tools that promote and help them to understand what they need to do.
• Cancer patients after chemotherapy sessions feel low and unhappy, and are tired of the emotional stress involved. They never talk to anyone and shy away from contact. When they are online, they have a new lease of life, being able to interact and get support from other patients. Moreover, they can do this anonymously! Learning simple remedies and tried and tested tricks from expert patients who know and feel what they are going through because they have ‘been there, done that’. The power of e-health through online patient forums and support groups allows information to flow freely – and since this is digital, it’s much more easily available and accessible.
• A patient in a remote village in South India suffering from acute pain in the abdomen has to make do with the local village doctor’s prescription. A year later, a telemedicine pilot allows this same patient to get a second opinion using a remote video link. He is able to identify what’s happening to him via the printouts he gets from the telemedicine center; and realizes that he must work at improving his diet if he wants to prevent his acid reflux.
Both the ITs – Information Therapy and Information Technology – must work synergistically to create a wonderful future for healthcare – one that is modern and simplifies the life of patients and doctors.
HELP will be organizing its 2nd Annual Conference on Putting Patients First. The theme this time is : Using Information Therapy to Put Patients First in India.
The website is at http://www.patientpower.in/
This will be held at Nehru Centre on Sunday, 9th October’11 . Mr.Ken Long , Vice President, International Operations at Healthwise, U.S.A, will be the keynote speaker and he will be talking on “What Healthwise is doing in the US to Promote Information Therapy – what we’ve learned so far”.
On this occasion, we will be releasing a book titled, Using Information Therapy to Put Patients First.
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