Patient Health Records Online

Bill Crounse

Bill Crounse

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The patients are much more engaged and satisfied when they feel that they have a kind of open relationship with their healthcare providers, hospitals or clinics; that there is free flow information and nothing is being with held.

1. How will the Personal Health Records (PHRs) help the Patient to control his / her data?

The fractured nature of the healthcare industry, demands a PHR that puts consumers in control of their information. It will benefit them to connectivity, portability and privacy and give them a high level of functionality that will enable individuals to act on their data for improved health management. As a physician, I know how incredibly important it is, nothing is to be gained by withholding information from people. What we find today is whether it is public sector economy or private sector economy, whether people are being asked to pay more for the healthcare or simply be more responsible for their own care, there is a need to arm consumers with information and the PHR is certainly a very important way to do it. And at Microsoft, we believe that the PHRs need to be driven and managed by consumers themselves.

2. What has changed from EMRs to PHRs today?

I don't think it has changed. We talk about two different things. EMR is really the doctor's copy for your health information and the PHR is your copy of that information. Although globally the PHR really includes all your health information ideally over your lifetime from a multitude of sources including a hospital or clinic or doctor's office you visited. So, they are really two different things for really two different purposes. If you think of the EMR as being my doctor's copy of my information and my version of that, particularly aggregated over multiple of hospitals and clinics, that's what I consider PHRs. And again ideally it is a longitudinal record that would have information over the course of one's life and I include even such things as their allergies, immunisation and risk factors.

3. How do you think PHRs will affect Patient care?

I see it as a very positive impact on patient care, I myself as a physician, practiced for more than twenty years before joining Microsoft and I have always believed that patient's who are powered and engaged with their physician can have an enhanced dialogue and share information with their physicians, actually are people who end up with healthier outcomes and get better care. I think ideally we want our patients to be informed and to be copartners with us in managing their health. And PHR is one very important way to do that. Also, there are obvious advantages that can help speed workflow. Many of the scenarios for PHR involve being able to get that information, share that information with who ever you want to share it with. That of course includes your physician or your hospital meaning that in many cases properly configured, you won't have to be filling out similar paper work every where you go because you can grant a doctor or a hospital access to your information. That's the way we designed our Health Vault system. Microsoft's Health Vault here in United States, is to give that functionality so the consumers really in control of the information and can grant access to a healthcare provider organisation or healthcare provider or a family member and they really have complete control on that information.

4. Is allowing patients' access to their medical records safe?

Nothing is more important than data privacy and confidentiality particularly when it comes to matters of health and genetic profiles and all the kinds of things that you could do with health information today. Certainly in the design of Health Vault, we made it very clear that your trust is extraordinarily important and that data must not be lost or misused by those who hold it or by anybody else and that what ever service one is offering must be told in a strong foundation of security and privacy, in fact, a sort of implied contract with regards to Microsoft Health Vault system is that the Health Vault record you create is controlled by you. The consumer decides what information goes in to that Health Vault record. You decide, who can see and use that information, your information on a case-by-case basis and your health information won't be used for any purpose including commercial purposes unless you are asked and you clearly tell us that we may do that. So, That is taken very seriously and has stated publicly that the Health Vault system has been architected in such a way that the onward transfer of data is prohibited without explicit information and consent and that serve the contractual obligations with advertisers, partners really require protection of any data that's in data system in the platform, privacy, policy simple and easy to understand.

5. Do you think use of PHRs would create half-informed patients?

No, I think PHRs create patients more informed. I mean, how too often today and this is true about most of the developed countries, emerging economies and emerging countries healthcare information is siloed, healthcare information is often withheld from patients but let's be very clear the patient has a right to this information. It's information about them; it's of vital interest to them. If we truly expect people to become informed consumers of health and become engaged in the healthcare process, and people are responsible for their own health and health outcomes, averting risks and practicing healthy behaviours, then information is a very good thing in one way to get information in the hands of people is through the propagation of the PHRs. There are multitudes of ways of doing this and I also should be clear that because it's often being stated in the press with regards to Microsoft Health Vault here in the US, people have called Health Vault itself a PHR and it is actually thought of as a platform upon which PHRs can reside, PHRs that are developed by partners and provider organisations. But of course it's a lot more than that. Health Vault also is the place where people can search for health information, connect with that information, store health information and share that information with whoever they want to share it with.

6. Do you think sharing all the reports to patients will be safe?

I think you have to put in the context. Clearly, there is no value in sharing the information, which people can't understand. So, I think it's our role as providers to be the interpreters, the medical editors, the guides, the counselors, the consultants to our patients to help them understand information that is in both by EMR and information that is shared with them as a part of PHRs. I also think quite clearly that there are certain kinds of information, which you certainly don't blindly share with the patient without context. For example, I would never advocate that a newly diagnosed HIV+ve patient should receive that information in the form of e-mail, it has to suddenly pop-up in the personal health records. That kind of information or diagnosis of cancer one can name any other instances. You need to provide a context; you need to provide your personal touch and that doesn't mean the information becomes a part of the PHR if the patient wants to store it and wants it as a part of the record, but, I think we must be cautious in how we communicate information and making sure the context is provided and patient has the tools and the support to understand and make use of that information.

7. So, there's no need to disclose complete information to the patient?

I don't think that's exactly what I am saying; ultimately all the information should go to the patient. But what I am saying is it should be done with discretion and there must be support around that if it's a very serious diagnosis or if it's something that the patient wouldn't understand. It interesting that here in America - I can't speak for other parts of the world - there are actually some healthcare systems like Kaiser, and you'd have heard of a group called Cooperative and University of Pittsburg Medical Center who have truly opened up their electronic medical records and made it available to the patients and, with rare exceptions, are sending lab results and X-ray results and sending all information to patients and I think what we are learning from this is that by and large patients are appreciative of receiving this information and it's not causing the kind of problems that some people seem to anticipate that it will. The patients are much more engaged and actually much more satisfied when they feel they have that kind of open relationship with their healthcare providers, hospitals or clinics; that there is a free flow information and nothing is being withheld. I think that's only right. Again I would stress the point it is after all about the patient, it's their information, it's so long as we provide context to that and support that the patient has the right to information.

8. How will this affect the doctor-patient relationship?

I think it greatly enhances the doctor-patient relationship. I always like to remind people that the word preceptor (not sure he used that word but preceptor means teacher in latin) comes Latin meaning teacher, and part of the healing art is being a good teacher. We really want to partner with our patients, we want to help educate them, we want them to understand an illness and we want them to understand the preventive measures they can take from the coming ill. Ideally, around the world we want to move to healthcare system that focusses quite frankly much more on prevention and much less on sickness care. Not that sickness care isn't important, but I think the pendulum over the years has swung too far towards acute care and sickness care, and not investment in education and prevention, particularly around the developed world where so many of the chronic diseases we now face are really lifestyle diseases; cardiovascular disease, diabetes, obesity, cancer of the lungs etc. We can have a dramatic effect by focussing more on prevention. And so, sharing information with patients, making number of consumers of healthcare, getting a more engaged, empowering them with information, these are all good things and these are the things that the PHR - and the other way which we can leverage technology to put information in the hands of our patients will play out in the years ahead.

9. From your experience, do you feel that doctors have taken positively toward PHRs?

While I think many of them have. I find that most of my colleagues, certainly in primary care, talk about the term called the "medical whole" the idea that ideally everybody has that primary care position (not sure) that one doctor that provides continuity of care and really serves as a sort of their consultant and guides them through the medical maze. This definitely enhances the relationship and I think ultimately it's the kind of relationship that all the physicians would like with their patients depending on where one practices, and how one is aid. Sometimes, reimbursement and other issues get in the way of us having the kind relationship with our patient we might like and being able to spend the amount of time that we might like. But, that again argues for how do we leverage technology to improve the whole process, improve the work flow and improve the ways that I can deliver information and context to my patients and beyond what I am able to deliver in my office one-on-one with them. And here again technology would play a very big role.

10. How has the response of patients been to PHRs online?

I can speak certainly for what are the experiences with Health Vault. We are very pleased with numbers of people who are establishing Health Vault accounts and availing themselves of the services, whether that is search for information or upload their medical information or connect with partners and services and devices that are made accessible through the Health Vault. So, we are at the beginning of a long journey; this won't happen overnight. I should be clear, that Microsoft is not the only company this going to be the space. There will many others including provider organisations and payer organisations. But, I must add that I am extremely pleased be associated with a company that has put a firm foot in the water and has developed a service that people are so excited about.

11. What are the benefits of making Personal Health Records available online?

People are looking for a way to securely store their information and aggregate information. And online is a good way to do that. We all understand the advantages of arranging travel online and doing our banking online and shopping online. I think there is a tremendous advantage to being able to manage all aspects of our healthcare online, including aggregating and storing our patient health records, so that it's available at the point-of-care when ever and where ever it's needed whether I am in my home town or traveling across the world. The kind of technology we are taking about enables scenarios where people who need access to that information can get added with my permission or with my designee's permission to be able to get at that information in the time of need and I think that's extremely powerful. It's also extremely powerful for me is the consumer to have tools online that might help me manage by diabetes on my high blood pressure or my weight problem or mental health issues or any of the number of things that I might be dealing with in my life. We can again, using technology, unified communications, the whole myriad of ways that we can communicate, collaborate online, develop very powerful tools that extend and leverage our healthcare systems as they exist today. And one of the things if you follow my blog and I would encourage you to take a look at it - if you haven't, it's called healthblog. I write extensively about the power of unified communications and the web, to not only provision of health information, but actually certain kinds of medical services moving forward. As I travel to world, I am seeing many instances - probably outside the US than inside - where people are using Internet technology and high tech to provision care and help people stay in their homes and deliver commodity telemedicine services to deliver care to rural villages in India and Africa and other places. So, I think it is a very exciting time in healthcare.

12. How are PHRs likely to evolve in the coming years?

If I may use the analogy of the Automated Teller Machine (ATM) if you think about early ATMs, when quite frankly nobody got too excited about them, originally they were ways that you could just go and look at information, you could look at your bank balance but you really couldn't do very much. In a way, today's rudimentary PHRs are a bit like that. In many ways today what asking consumers to sort of aggregate their own information and enter in to a Health Vault account or store it in a Health Vault or other kind of repository and there are not a whole lot of transactions going on. But, I think where we are moving, and you are suddenly be seeing this an announcement coming forward from our company and I am sure others, that it will become much more fluid much more transactional, in the same way that my banking accounts or my brokerage accounts today are highly transactional and the data is uploaded, downloaded data, but all of the partners that I work with in the ecosystem are exchanging data through this systems. That it would become much more automated when it does, then we will truly a have arrived at a point I think people will understand and avail themselves of the patient health records. Because today, I mean it's going to be the highly engaged, highly motivated consumer who is going to want to manually to track down their health information and then upload it into some repository. The more idea system is, put in some information, but, my doctor contributes to that information, my dentist and hospital might contributes to that repository. So, that's what we need to move.

13. How will this affect the current healthcare scenario?

I think what you are going to find around the world, and I'll start-off speaking to developed countries around the world, developed economies that we hear more and more about consumers / patients demanding more transparency in healthcare; transparency in pricing, transparency in quality, transparency in services. I think that comes hand-in-hand with notion that government and payers of healthcare around the world are putting more and more responsibility on the consumers. If consumers of care are going to be put in that position, then they do indeed deserve greater transparency. And one of the ways we can deliver that transparency is through online services and through personal health records. And in the same way, I think the personal health records, in many ways, makes the patient or consumer more transparent to the healthcare provider because he / she has at his / her fingertips the data that they need to take care. So, I think it really benefits all sides of equation. And I think in the, let us say, in less developed countries I think even where medical resources may be less available or scarce or difficult to access, there's all the more reason that it's extraordinarily important for people to have a record of their information. And, it's uncommon, I mean I know in many countries around the world, the norm is that there is a expectation that the patient is actually responsible for keeping their health record, the health system doesn't take it upon itself to be the arbitrator or the repository for the health record, it's for the patient who owns the data and actually it makes a lot of sense.

14. Could there be any unintended consequences of making PHRs available online?

I think the unintended consequence would come should there be breaches in security or privacy, which is why I would implore any one contemplating developing a service ore repository of this kind of information, to be extraordinarily cautious about privacy and security. We hold this information dearer than even our financial information. Indeed I think, and rightfully so, consumers need to be cautious, I think they need to be wary, I think that there's a good reason to be concerned, particularly as we get into the area of genomics and DNA analysis and so forth and in risk assessment, you know science moves so forward that we start predicting disease states and people. We certainly don't want people put in jeopardy being discriminated against on the job front or in the society. So, these are all things that patients in healthcare organisations and Governments and everyone needs to give deep thoughts to that we are prudent in developing systems with appropriate privacy and security because nothing is more important.

15. Apart from security and privacy concerns, are there any other issues that could pose a challenge to PHRs online? (If yes what are they and how are you trying to rectify them?)

There are challenges in standards around medical data and there is a lot of work going on now around the world with standards bodies and governments to align things to a greater degree so that we'll have more interoperability between our data repositories and health systems. That's extraordinarily important. I think, your funding of these initiatives is important and the business models around, these kinds of services is important and I think there is still a lot of debate in the marketplace about who pays; are these some how advertiser-supported, are they are supported by the government or are they supported by employers or are they supported by patients themselves or provides. I think there'll be an appropriate model out there. But, I think that's all a healthy thing and I think what's most important is that around the world that we start changing the paradigm of thinking about healthcare and the way healthcare delivery because with our ageing population with people living longer around the world - whether we are talking about developed countries or underdeveloped countries - we are seeing shortages of qualified medical professionals, challenges in certain specialties of getting people the help they need. So, we need to be smarter in the way we use our healthcare facilities and the way we access those facilities and using technology to benefit mankind and improve health around the world.

16. How have the healthcare IT companies responded to this?

I think you are seeing a great deal of interest. The major vendors around the world are very interested and many of the vendors / good partners that we work with; companies like Cerner, Eclipses, Epic and many others that I could name, they've all developed patient portals. They are all on-board with the idea that the patient has a right to this information and they want to open their systems, encourage secure ways so that the patients can gain access and so I think the industry is responding in the right way.

17. According to another expert, cost is the main factor for PHRS. How do you agree with him? Is he talking in consumer point of view?

I think, when talking about cost, you really also have to talk about value and I think we have enumerated the value points around personal health record. I think I was clear in my earlier statements that yes there is still a lot of debate about what is the best business model and I think a number of business models will emerge. I think services will be developed where consumers decide whether there is a subscription fee or a yearly fee that they will launch to pay somebody to maintain patient health records in a cloud. I think there will be business models that are supported through advertising. Business models, where the payers of healthcare that the government, insurance companies will pay. So, I think there will be a variety of models out there and ultimately a few of them will prevail or will become highly popular.

18. With so many standards for data storage and management, how difficult / easy is it to follow all of them?

Well as I stated I think there is a lot of effort going on in this area, we started lot effort to do. But, one of the things that Microsoft is contributing here is we have our connected health framework and our connect health engine and architecture of work, web services in healthcare that we're making freely available. We are doing a lot of work too around a common user interface design and lots of other things. So, I think it's a good thing that some of the large global technology companies are stepping up the plate now to solve the issues that we have in healthcare. Healthcare as an industry is lagging behind other sectors in its use of technology. I see nothing but positivity in the fact that global companies like Microsoft are stepping up the plate to solve so many of these really hard problems.

19. Are the current data safety standards enough?

One could argue that what has held us back in healthcare is not the lack of standards but may be too many standards. And that our standards bodies have moved too slowly and sometimes have been at odds with each other. We need to sort through that. Here again I think that technology and web services and XML is taking us where we need to go. You've also probably read about the investments Microsoft is making for example with technology called the () which we acquired, which is very good at aggregating lots of different kinds of data from lots of different kinds of sources and making it highly usable to end-users and the ability to analyse that data and make sense of it and turn data into information, information into knowledge and knowledge into wisdom. So, yes we need standards, there is no doubt about that, but I think that we are making good progress.

20. How has the initial response been to Microsoft's HealthVault from the industry?

The response has been very positive among the partners. We have device manufacturers as partners; we have healthcare provider organisations as partners; we have medical content providers as partners; and we have insurance companies and payers who are partners and even government entities that partnering and wanting to provision certain kinds of services and information. So, I think the response has been very positive.