Patient Destiny

One Patient, One Record - Day Two

2009-08-28T10:35:42-07:00

Patient Destiny is now following up on the VERY successful first event - Day One. This was a full day symposium held at the University of Toronto April 21, 2009. The Final Report is now available of this site for download. A hard copy can also be obtained for a modest fee (including shipping costs).

Our next event - Day Two - is a half day workshop scheduled for September 29, 2009. The agenda and background information is also available for download on this site.

In essence, our objective is to begin the process of gaining access to patient health information gradually over a period of steps. The first step is blood work results.

We believe that blood results are a very common diagnostic tool used for many illness and disease groups. Testing patient access with a limited portion of the electronic record will allow for much learning at very little expense and risk.

I will be posting more detail over the coming days. I look forward to all of your comments and a very "healthy" debate.

One Patient, One Record (OPOR) Symposium

2009-01-30T08:08:27-08:00

OPOR Symposium Background:

In today’s healthcare system, the objective, put quite simply, is to treat the patient. One can argue that it is much more complicated than just “treating patients” – it is about many complex factors including illness care, wellness strategies, population and public health initiatives, and varying degrees of trauma management. While this detail is accurate, from a very broad perspective, health system operations are “all about the patient” – if there were no illness or trauma, there would be no need for a healthcare system.

Yet, even though the patient group represents the fundamental foundation of the healthcare system, patients have seldom been viewed as more than a “by-product” or “side-effect”. To illustrate, patients are not typically involved in (i) setting healthcare policy; (ii) conducting and disseminating research; (iii) coordinating patient networks; (iv) providing or managing individual care; and (v) evaluating the performance and outcomes of varied healthcare delivery plans.

Innovative research that focuses on putting information in the hands of the consumer in healthcare – i.e., the patient – is now attempting to achieve two major objectives:

1. Bring the healthcare system in line with many other industries by incorporating consumer inputs;

2. Improve the adoption of information technology, and thereby increase eHealth benefits, by combining the efforts of two groups – the current active stakeholder decision makers (i.e., healthcare personnel) with the patient group.

Symposium Objective:

To begin the dialogue between patients and the healthcare system to arrive at One Patient, One Record.

Ultimately, we believe in developing an electronic health record for all Ontarians that can be accessed by the continuum of healthcare providers as well as the patients themselves which will then lead to improved health outcomes.

The Patient-Physician Paradigm

Once the patient accesses their healthcare information, they must interact with the healthcare system to meet their health needs. Diagnostics are determined, treatment is executed and post-treatment follow up is completed and measured.

As a result, systems must allow and promote patient–physician interaction … and action!! We need to allow patients the freedom and time alone with their healthcare information BUT not alone with their problems! This is where the healthcare delivery system needs to step in. Research to date has identified a very specific patient group that is eager to challenge the status quo. We refer to these patients as Consumers with Chronic Conditions (or the 3C’s). This group is very knowledgeable about their condition(s) and extremely motivated to become fully empowered – both individually and collectively!

Methodology:

We anticipate an attendance of 100 people (excluding speakers and support personnel). The symposium will be set up with 10 tables with each table comprising five healthcare personnel and five patients. At different points during the day, we will have discussion on five previously prepared questions. After each question has been discussed, each participant will be asked to confidentially vote. Votes will be tabulated and reported back at the end of the day.

The five questions will cover the areas of access, content, use, privacy and outcome measurement. The answers will yield a framework for an action plan on how to move forward in the development of one electronic health record accessible to both patients and healthcare providers.

Attendees:

This will be a very special symposium because we are offering a dialogue opportunity between two distinct stakeholders – healthcare personnel and patients. This event will bring together key healthcare decision makers and service delivery personnel in direct communication with highly motivated and informed patients. Further, the objective of the day is to create a firm deliverable: an action plan to move the Province of Ontario forward regarding patients accessing health information or, if you will, to provide a framework for “ePatients”.

Patients:
Patients will be recruited in several ways: contacted through disease associations and foundations, cross-patient representatives and communications to the public at large through health providers and the media. Each patient must apply to attend; a committee will review the applications and select the top 50.

Healthcare Personnel:

Healthcare personnel are comprised of providers, administrators, researchers, academics, vendors and funding organizations. They have been invited to bring together as representative a group as possible in terms of perspectives, organizational relationships and geography. We are also targeting 50 attendees from this group.

Fee Structure – Adopt-A-Patient Program:

The registration fee is $200 for each healthcare personnel. This is meant to cover the cost of two people – the healthcare personnel and a patient (basically, $100 per person). The patient’s fee is subsidized to support and promote attendance.

Step Ten: Final Step

2008-05-23T06:46:51-07:00

Step 10: Reach out to other like patients to complete the circle as this promotes awareness and mentorship

We must begin to invite others to support and participate in our cause. Why? Because this cause is about our healthcare system and how it affects all of us – the users (all patients and their families) and future users (all of us).

Today, there is no regular forum or an association in Canada (as in almost all countries around the globe) that speaks for all users of our healthcare system. This is even more strange when you consider that, in Canada, all of us are the ultimate payers as well. This is what Patient Destiny is all about.

Patients need an advocate, an organization, an infrastructure that can provide an environment where we can freely access their own health information, where we can network with other patients, where we can receive help and constructive feedback, and where we can have our collective voice heard with respect to health policy decisions that are being made.

We need to be more involved and informed!! We NEED access to our own health information electronically!

Access to our health records would greatly enhance our ability to manage our condtions. We believe that this is true for all patients.

Imagine the impact: With immediate access to their records and test results, patients would be able to improve their health status by getting feedback on their conditions in a more timely manner. If each patient (that is capable and willing to do so, of course) were to manage his or her own conditions in a more effective way, the cost of funding the healthcare system in your province would drop significantly… and there is evidence supporting this claim.

So, why can’t we get access to our information if it will make us healthier and will improve the cost of running the health system? The only reason we can think of is that we have not spoken up and demanded it – until now! We want access to our health information. All we want to do is help – we want to help.

Step Nine: Stay Current with Support

2007-08-03T12:48:24-07:00

Step 9: Keep working

Patient empowerment requires work! Even after you have achieved a certain level of successful involvement, the work does not end - it is just beginning.

First, you should stay active in your general search for information on your illness. There are always new developments, research trials and findings, and new treatment options. When things can start to look very depressing, it is quite a nice thought that maybe there is indeed something that may be coming in the next year or so in order to help out.

Second, keep looking for specific tools that may help you like a personal health record or patient portals. In addition, there may be new providers or clinics that can offer alternative levels of care. Look also for tools that assist in your decision making in order to work towards empowerment. There are many out there. Again, this is not for everyone, but typically people that are chronically ill – 3Cs, are very interested in considering options.

Third, look to continue to partner with our patients out there. They may exist in your neighborhood or somewhere around the world, but there is indeed some solace in finding people who share the same perspectives and same experiences - even if these experiences are not so much fun!

One place that puts it all together to support you is Wellocities.

Wellocities is a new type of web page or web service. It is not meant to be healthcare's answer to the Yellow Pages or Medicare's Face Book - but rather a service that has been totally designed and developed with only the patient and the consumer in mind! In fact, many patients have been actively involved in the early innovative stages of this service.

The goal, as always, is to empower the patient. This means providing the consumer with data and information in the format that they can use, interpret and make effective decisions. The decision making is a very critical part of this service as we want to change patients' behaviours; up until now patients are very passive recipients in the decision making process, however, we want to engage patients to be part of the process in order to improve overall health outcomes! Most importantly, it will improve your own health results!!

Try www.wellocities.com !

Step Eight

2007-07-09T12:51:14-07:00

Step 8: Be responsible – follow the agreed upon treatment and plan.

Again, this may seem very straight-forward, but this little "step" actually gains significant credibility with your providers!

If you are to become truly empowered, then taking responsibility for your own actions - leading all the way to responsibility for your overall health and care - is critical.

Providers see their patients as being extremely vulnerable. These people, their patients, are often interacting with a system that is foreign to them, one that is very complex, and they are trying to navigate through this system at a time when they are probably at their weakest - having just been diagnosed or in the middle of a flare-up of a chronic condition.

Consequently, providers take charge - they feel that they have to in order for the patient's overall health picture to improve! Over the years of practice (and all of their training), it is second nature for a physician or care provider to order tests, drugs - in effect, order you, to take the following path or treatment plan. They do this WITHOUT consultation with you - but not because they are rude, mean or arrogant, but because they feel they have to. All of their training tells them that this is true ... and often the patient population goes about proving it on a daily basis!

Empowerment, then, is not about getting ordered but rather working with the provider to determine what is best. But to do this, you must "undo" all of the years of physician practice where they are usually the only one in charge of making decisions! Consequently, this is not easy.

It can be done - and step eight is a big part of it! Following the agreed treatment plan and providing feedback to your care givers instills a lot of faith and credibility that you are responsible. I know this may sound like we are making something out of a trivial concept, but patients often do things that are against their overall benefit - as stated previously, look at smokers and the problem in our society with obesity! If you are to become empowered, you must work to take back some ownership of your care.

Consequently, part of taking ownership or being "in charge" is about following orders and providing honest and accurate feedback to your physicians and other care givers

Step Seven

2007-07-08T15:49:12-07:00

Step 7: Provide your physician with accurate status updates – you work with him – he will work with you.

This may sound quite simple - perhaps even silly? Why would I not tell the truth to my doctor? Well, you would be surprised what information patients withhold from their care-givers. In fact, the FOX Network show, House, is primarily based on the premise that all patients lie and they lie continually!

Why do patients lie? I know in my own case, there is always the temptation to smooth over some points - especially when you as a patient know thatthis issue may lead to lots of compliocations and pain. I know, this should be the very thing that you are telling your ohysician - and this is true. However, human nature being what it is - there is always a tendency to avoid pain and suffering.

Therefore, patients may provide some details without all of it - or sometimes just live with this "problem" for a while and see if it goes away. You may think that this is not lying - but in fact, it is - lying to yourself - first - and then by not providing the information, your withholding of facts constitutes a false image when your doctor asks "how is everything?" or "are there any other problems?'

By not providing all of the accurate information, your provider gets the wrong or perhaps, not as precise, picture of your health. Then all of the care planning is based on that picture. Then, should the problem get bigger, you will lose all types of credibility when you have to backtrack and state that there is another issue that you "forgot" to mention.

This tends to un-do all of the good work you're acheived in the first 6 steps of empowerment. It is a must - disclose all information and then you are your doctor will both see the relationship as a true partnership.

Step Six

2007-07-04T19:34:09-07:00

Step 6: Start to raise questions and present options to your provider.

Actions speak louder than words! This is so true when it comes to convincing your physician that you are serious about taking more control over your health management. This should take the form of discussion at first. One way is to discuss findings or literature that you may have come across about your illness or condition. This will prompt a further discussion around options, therapies and other issues relating to the bigger picture of your overall health.

This step will prove to be very important. In the traditional doctor-patient interaction, the doctor speaks and the patient listens ... and hopefully follows! This is usually one way, with very little questioning ... but also very little learning as well.

In the new dynamic, the patient, through questions and other insight, takes the conversation away from the very specific patient (i.e., you) and applies it to other situations - thereby removing the power differential that exists between the two (between patient and doctor) and making the two of you equal participants in a conversation about other things. This perception of equality then lends itself nicely as the conversation then returns to you and your next steps. The physician will begin to even ask for your opinion and input.

Should your questions and examples provide some further options, so much the better as they can now be applied to your health situation. But even if not, this demonstrates to your physician that you are thinking about your illness and want to do as much as you can to maintain your health.

I truly believe that all physicians want that - to support you in improving your health.

Step Five

2007-07-02T07:58:29-07:00

Step 5: Get access to information so as to help you make decisions.

This information can take many forms and will really depend on your own situation and illness. For example, this will involve general search in order to find information on providers, diagnosis options or potential treatments - perhaps using health specifcialized search websites. This MUST also include, however, accessing your own specific health data. And, there are no 2 ways around this - this activity and data search must be accessed from Care Providers through a personal health record (PHR) or patient portals that are becoming more and more popular within hospitals and health science centers.

To truly manage your care, you need to have your information - plain and simple!

I know - this may seem like an impossible task - and this is only step 5!!. Actually, the search for complete and comprehensive PHRs will be quite a long process for all of us. What this step espouses is the need to BEGIN this process!

This means that we must start somewhere and that somewhere is with your physician or provider. Ask them for more details around your care and your labs - something more than "you are doing well and we'll see you in 6 months".

If you are to become empowered, you will need to become familiar with your very specific health indicators. As with most conditions, there usually are many factors that will contribute to your overall health and trying to learn all of them overnight will be impossible.

Therefore, you have to start small and find out more about just on indicator - and how critical this one single factor is. Once your physician sees how interetsed you are in understanding, he/she will try to bring you into the decision making as this then makes you a more responsible patient. Responsible patients are healthier patients because they understand what is truly at stake! Trust me, physicians want nothing more than to help you stay healthy - and you have to be the one to manage that!

In addition to other sources of information, there are many patient empowerment websites that will assist you ... and this is on top of the many disease specific associations that offer support. These general sites will allow you to get in touch with patients who are active in empowerment – even if they have other conditions and illnesses.

Step Four

2007-06-28T06:59:26-07:00

Step 4: Take stock of your health status - search for information on your disease.

What is your healthcare status today - right now? This requires that you be totally honest with yourself and evaluate your overall health situation. It can be that you are doing very well or it could be that things are actually not looking so good. This is not as important as being totally honest with yourself. I believe that the worst sin we commit on ourselves is when we lie to ourselves. We position things as not so bad or it's okay, when really we know deep down that changes are needed.

This is a very important step in the path to empowerment. It is almost impossible to improve your health status if you do not know what your present status is - in other words, to move from here you must first know where "here"is!

This self-evaluation requires work and honesty! The work involves reaching out and finding more about your illness, condition or disease. This effort can be supported by many organizations that can be easily reached through the growing network of websites. In addition, there are a number of bloggers out there that have made their way to patient advocacy and empowerment through their own illnesses and health journies! These people offer great support in the area of their own conditions. Here are just a couple:

1) One example is Diabetes Mine and the work that Amy Tenderich has done in supporting all patients with diabetes. On her blog, there are links to many other diabetes bloggers as well as websites that contain information on the condition, treatment and support. Amy have repeatedly won awards as "best blogger"!

2) A second example is more general concerning Nutrition and Life where Vreni Gurd helps support patients regarding various areas of physical activity and food.

The second part, honesty, is much harder to come to grips with. I can take my own healthcare experience as an example, but in this case let's talk about a hypothetical patient named Mark that has just been diagnosed with prostate cancer. Mark is 41 and otherwise in great health, except upon his annual physical, his doctor found that his prostate in cancerous. Given the state of the disease and his age, Mark has a number of options. A physician that has partnered with Mark to work in managing his overall care knows and appreciates the dilemma that Mark is in. He can take a less aggressive treatment with very few side effects or can opt for something a little more aggressive but with many long term health implications.

In the end, there is no single right answer, but rather the answer that is best for Mark and his family and one they all can live with. It is up to his physician to identify the pros and cons of all of the options, but in the end, Mark will have to decide. It is imperative at this very stage that Mark does not lie to himself about the nature and state of his disease. Many people do and end up making decsions that work in short term, but lead to lots of problems down the road. It's alright to make decisions based on the short term - as long as you are honest wth yourself that that is in fact the case!

Step Three

2007-06-27T17:49:35-07:00

Step 3 is to search for providers.

The path to empowerment requires work and commitment. Once you believe that patient empowerment is critical and requires a change in mindset and responsibility (Step One) and you have found a mentor that has your condition or illness (Step Two), the next step is to convince your physician that you want to be empowered and that you can be trusted - that's right - TRUSTED with managing your care!

Most of the physicians that I have met, and worked with, truly believe in the patient voice and have focused their careers on providing endless support for their patients. This is not true of all doctors, but is true of the majority. This means that finding a doctor to support your own personal healthcare empowerment should NOT be too difficult.

What is difficult, however, is doing the work to convince your doctors that you are serious about your care and that you are motivated to manage it effectively. I know that this sounds trite, but not everyone does what is best for them...if you do not believe me, then just look at all the smokers out there!

This is not to minimize the effort in finding a doctor that you connect with. There is really nothing better than having a good heart-to-heart discussion with your physician where both of you can be honest and work together openly.

If this is not the case, then finding another doctor may still be critical even though your doctor believes in patient empowerment. Sometimes their definition is just not the same as yours and some times it is just a personality issue.

Whatever the case, do not rest until you are extremely comfortable with your physician - in fact, all of your care providers!