I’m trying to collect up the information to see a new doctor. That means filling out a family medical history, listing my current medications, recalling all significant medical care and requesting medical records, and capturing symptoms; again. And, I know that the next time I go in to the office after my first visit, they are going to ask for information again and it’s unlikely they will give me a copy of the information from the visit that I’d need when I do this all again later with another new provider.

You probably know the drill of calling offices repeatedly to remind them of the requests for prescription refills or to send medical records, chasing lost approvals to release information, and fax machines that can’t be trusted. (It is ironic that the medical profession is so dependent on the fax machine!) Through it all, and yes, I’m really just whining now; through it all, being told by the automated phone systems at each step in the phone tree, “if this is a medical emergency, hang up and dial 911…”

Well, it is an emergency and I do wish 911 could fix the state of our healthcare system in America – its expensive, inefficient and ineffective. But this is personal now, the healthcare system is wasting my time and encouraging me to put off and ignore my healthcare needs. I do believe there are great people in the medical profession that are talented and caring. The development of “patient rights” is helping the process of bringing some balance to the relationship of patient and care provider/doctor. But I don’t think just good people and “patient rights” signage and forms is enough. Looking ahead at the issue of costs and quality, this path we are on must change. I believe that there are three cornerstones of the future healthcare system that build on and enable greater personal responsibility for healthy living including 1. Longitudinal data and genetics based personal healthcare information systems, 2. Personalized healthcare navigation, and 3. Patient directed healthcare management.

Some of this will come from cost pressures, but I’m not expecting signficant reform to come from within the system. The tools of open innovation and entrepreneurship that can offer disruptive new solutions are going to be needed and engage in the challenges. These efforts will be enabled by some progressive groups looking for change such as the Alaskan Health TIE program, encouraged by the alternative high cost and lower quality of care, and willing to take on the regulatory changes needed to allow and protect the changes.

I do not know who is up to the challenge of addressing the issues we face, but the issues I am focused on frame the situation at a personal level that is more important than the issues of high cost and low efficacy of our current healthcare system. Some of these issues include:

• For all of the white coat perception of authority and expertise, there is a lot of our body’s care and health that is uncertain or unknown. Diagnosis are to varying degrees a hypothesis that will be tested by treatment and confirmed by future changes in the symptoms. (I recently completed a week of evaluations to only find in my exit meetings with the two primary doctors that the first felt my current treatment side effects were the cause of my symptoms and the second felt that my dosage was too low and should be doubled, and the symptoms were due to not enough of my treatment!)
• If you are sick, you are unlikely to have the time, energy or expertise to exercise your “patient rights” and insure that you are getting the best care by comparing alternatives of care and assessing the costs and expected outcomes.
• If you are not sick you are unlikely to have the patience or time to sort out the details of market place options, employee spending account reimbursements, employer wellness benefits, annual open enrollment periods, preauthorizations, or best of all, sorting out the flood of bills arriving for months from a single hospital visit.
• Many are been forced or have by choice abandoned the system and are going to a “Doc-in-a-Box” corner urgent care or ER, but only when waiting is no longer an option. For some this is too late.
• Health insurance has usurped the patient and the doctor in directing healthcare removing personal capability and a sense of personal empowerment to manage personal healthcare. Insurance has become necessary for admission to the healthcare system, even for preventative care, rather than protection in the event of a major incident. And, if you have the wrong insurance such as Medicare, or one with limited “in-network providers” you may again be denied access to some doctors or hospitals. Further, insurance controls what medications you take, what doctor you see and what procedures your doctor can prescribe for you.
• If you do not have an advocate monitoring your progress and with you during medical visits, then critical and pointed questions about your care are not being asked, no one is challenging diagnosis or alternative treatment, and no one is recording and saving critical information you are receiving during procedures and visits. If you’ve ever encountered a cancer patient or an elderly patient who was given diagnosis or treatment plans and heard their later bewilderment and uncertainty, you’ll never let someone in health trouble be by themselves for an office visit or bedside visit by a doctor again.
• The care you receive will treat the immediate symptoms and send you home, not integrating past family history or considering genetic risk factors. You are treated as a biological island rather than part of a connected family.
• To get the medications or treatment you want or need you must get it prescribed or be given a referral, and then depending on the cost and situation it will have to be approved by the insurance company. Lack of preauthorization may delay or deny your benefits. As a person and a patent you have little rights to direct your own healthcare or modify the prescribed treatment. (You do have rights to deny treatment now with the new patient rights, but who in a time of crisis has the full time, energy and capability to really be empowered by those rights!?)
• Finally, when you’ve navigated all of this, you will have fragmented or no access to your information in a form that you can save, manage yourself, and share in the future. At best your medical provider will have offered you a “patient portal” that if you can get in, you will find it is missing information, and what is there is not in a form you can modify or share with others in the future. But more significant challenges is that over time your records are spread across many providers, probably many forgotten such as urgent care and ER visits, and portals no longer available and all with critical data that will be lost.

Combining my experience with chronic and acute healthcare needs; and my interests in machine learning, organizational management and empowerment of people to affect their future, it shocks me to see the state of the healthcare industry’s management of patient treatment and data. I’m not focused on just electronic records, but that is a part of the path forward. I’m referring to the basics like making sure that patients have a copy of labs so they can share them with another doctor who can compare the history and perhaps not repeat the tests because the data is inaccessible. I’m also concerned about the complete gap of information informing my medical care with a portable history of the genetics, diagnosis and treatment my family members may have received. I’m also touching on the ridiculous situation that makes patient directed choices to save costs on medical treatment, administratively impossible to pursue.

All of these issue have me looking forward and pondering what changes could and should come in the future. To start with there are some enabling technologies that may be already available or in development including:

1. A hosted platform for my ownership and aggregation of all medical history I can get my hands on, and future integration with medical record systems, portals and Dicom (imaging and testing) data stores. Initially it might just allow me to save my notes and scan my own records. Yes, it needs to be secure, and I need to be able to share with controlled and time bounded access. Let the doctor come to me for my medical information and contribute to my records; rather than perpetuate the current replication and fragmentation of data in every provider’s paper and electronics records repository.
2. A hosted platform for my aggregation and networking of family medical history including archives, stories, and links to the current medical history above. I’m not expecting this to be all accurate as memories fade, but I refuse to believe that my medical treatment by experimentation wouldn’t be better if informed by lessons learned by others in my family.
3. A platform for acquiring and managing my genetic data that would be able to link with the above two data stores.
4. A hosted platform for aggregation of all health and activity data I want to share including diet, exercise, symptom tracking and other health related actives and information I collect.

The infrastructure above then enables the following developments that enables each of us to take control of our health care, both preventative and management of acute and chronic conditions. These developments include the assistance of a personal intelligent medical analysis engine, human medical navigators to assist with understanding and choosing the medical treatments and services we need, with results that feedback in to the system to learn from and improve our medical care. The developments together are intended to help machines be better machines while helping us be better humans and include:

• Longitudinal data and genetics based healthcare. This starts with a medical analysis engine that is watching the growth of our personal medical history, the family history and linked records, our personal and family genetic data, and all medical studies and public health data available about local and global trends in health including local exposure risks; and then correlating the past with our current situation, providing insight to the best current health options for preventative action and management of acute and chronic conditions. Ongoing lifestyle and treatment data continues to flow in to this system to improve its effectiveness and learning. I’d even tolerate a few chat bots in this system to help collect, confirm or quantify data, and provide suggestions. I also hope this system would become fertile ground for a new wave of medical research.
• Personalized healthcare navigation assistance – The next step is eliminating the primary care system and replacing it with the growing paraprofessional system of health care navigators who can combine a person’s health concerns with their medical data to advocate and assist with finding the best activities, alternatives or treatments – with a focus on the individual and their long term outcomes, not triage of current symptoms. (No – I’m not talking about Chatbots!) Navigators also insure patients have a healthcare advocate or they provide that function in critical situations. Doctors don’t go away, but they are no longer the starting point for medical care, the individual is). Doctors and medical professions continue to be necessary as the skilled providers of specialized procedures and care, educators, trainers for navigators and paraprofessionals, and the researchers improving the analysis, diagnostic and navigation systems. Insurance companies are gone, but that is a different topic.
• Patient directed wellness and healthcare – Based on the insights from our our history and medical data and with the assistance of the navigators, individuals then take control over their own wellness and healthcare. We select the medications we want, we identify the treatments we want to use and we evaluate the efficacy of treatment and make changes to insure we achieve the quality of life we want with the public and personal resources available.

Distilling all of this comes down to an interest in building systems that can learn from the past and use the data that already exists to allow each of us to manage our own healthcare and wellness. I don’t expect the quality to improve or the costs to come down until each of us are empowered and served by the healthcare system, rather than servants of the system and its bureaucracy and enabling the inefficiencies and tolerating the poor quality. I’m sure there are parts of each of these ideas already in place I need to learn about, I hope you’ll share some in the comments, as well as your suggestions on how we can help inspire and support innovation and entrepreneurs to work on these issues.