What will it take to move our healthcare system to a truly patient-centered system? We know based on multiple data points that engaged patients have a big impact on the successful outcome of treatment. Leonard Kish cited the phrase back in 2012
Patient Engagement is the Blockbuster Drug of the Century
Referencing a 2009 Kaiser study of coordinated cardiac care and comparing to those not enrolled in the study
“patients have an 88 percent reduced risk of dying of a cardiac-related cause when enrolled within 90 days of a heart attack, compared to those not in the program.”
“clinical care teams reduced overall mortality by 76 percent and cardiac mortality by 73 percent.”
And this study in Telemedicine and e-Health. Dec 2008; Vol.14 (10): 1118-1126 that showed impressive results for chronic disease management:
- 19.74% reduction in hospital admissions
- 25.31% reduction in bed days of care
- 86% patient satisfaction
- $1,600 average cost per patient per year, compared to $13,121 for primary care and $77,745 for nursing home care
- 20% to 57% reduction in the need to be treated for the chronic diseases studied, including diabetes, COPD, heart failure, PTSD, and depression
Patient Data Ownership
I believe as do many others that the patient is at the center of everything we do and deliver in healthcare. By placing the patient and their information at the center of care and allowing them access and control we empower them and enable a model that moves away from the historical paternalistic delivery of healthcare to patient-centered and enabled care. It does come with challenges since many people contribute to that care and the current administrative and financial configuration focus the management and ownership of data with providers, healthcare systems and payors. While many patients want access to their data and some even want to own and manage it, many do not and are ill equipped to be responsible for this data. Perhaps what we need are some independent services and providers who aggregate, manage, secure and maintain patient data on behalf of patients – much as banks do with our money. There was some hope when Google and Microsoft jumped into healthcare offering Google Health and Microsoft Health Vault respectively. Microsoft’s version continues to this day – google withdrew theirs and Sergey Brin was widely quoted when he said
“Generally, health is just so heavily regulated. It’s just a painful business to be in, I think the regulatory burden in the US is so high that think it would dissuade a lot of entrepreneurs.”
But while complex, not insurmountable and as he rightly points out
“I am really excited about the possibility of data also, to improve health”
I am too and while there remain many challenges associated with securing and sharing that data the “entrance” of these alternative participants into the healthcare space – some perhaps looking at this from a simple employee perspective, is an opportunity for new ideas, insights, and people applying the collective brain power to one of our most pressing problems. I continue to hear from colleagues and friends of companies that are exploring and looking at healthcare. UPS highlighted their healthcare focus and the potential for 3-D printing in a recent tweet:
— UPS (@UPS) April 9, 2017
And I heard from a friend that Dyson even has a healthcare “focus”.
There are some major concerns as these data-focused companies offer access but do so with agreements that contain so much legalese as to be unintelligible and opaque to the consumer who may well be giving up much more than his own personal data but potentially giving up his future health. The GINA act offers some protection to individuals who in sharing personal genomic data that tag them with a “pre-existing’ condition could have found themselves unable to access care. But the act did not go far enough failing to address the issue of other insurance and employers who can use this data to deny access or coverage and perhaps even employment?
We need the combined power of this patient data to create the insights into diseases but not at that personal expense. There are many technologies on the horizon that offer a potential path to help achieve this and blockchain represents an interesting innovation of decentralized secured data that offers individualized control and dynamic revocation options for access. If you are interested in learning more about Blockchain this article in HealthcareIt News is a good primer for its potential in Healthcare: How does blockchain actually work for healthcare?. It is not a panacea and the fundamental rights and ownership still need to be addressed without giving away the farm to corporations and businesses.
The existing healthcare system incentivizes behavior that is in opposition to a scalable nationwide vendor neutral interoperable patient-centered data. Our model has multiple groups who have a vested interest in the control and ownership of data (for example Payers, Providers, Patients and even employers). Each has their own economic and commercial drivers and in many instances, these do not coincide with open sharing of data. In a system that is driven by activity and delivering care (Fee for Service) sharing data could mean a reduction in work and income. Until our reimbursement system moves to a more holistic care model that focuses on wellness and outcomes and incentivizes behavior that delivers better health and outcomes for patients through cooperative and coordinated care and ultimately equitably rewards all the contributors to these outcomes we will remain stuck in the quagmire of limited interoperability.
The key to a patient-centered interconnected care model is the free flow of data between all the areas responsible for delivering care. We moved away from the single index card medical record held by your personal physician who was the focal point of care and care coordination to a distributed team-based model of care that encompasses multiple areas and people. In some instances, thatcher coordination may be carried out, at least in part by the patient or their family members, and they need to be included and ultimately in control of the data and its flow. The only way this team can deliver excellent care is through the frictionless flow of enhanced data and knowledge. This information flow must include the patient and all their family members that are authorized, interested and engaged in their care. Data should be shared with the patient’s consent with everyone concerned and available for as long as it is needed to deliver care but this access should be flexible enough to allow it to be revoked or removed when it is no longer needed or necessary
Welcome to the Fray
I am a big fan of learning from other industries and perspectives and spoke about this at HIMSS Conference in Orlando
The Best Exotic Marigold Hotel and I am excited to see the rush of companies and people into the healthcare space but for those stepping in and thinking about data and the ownership and control of this data, I would suggest this requires a new way of thinking. Much like security – patient access and control needs to be baked in from the start. Taking ownership and rights away from patients will stall progress and anger your constituents and community. As ePatient Dave would say or better yet sing:
Give me My Damn Data
Here’s hoping that these new players see the value of the engaged patient and include some of these principles in their march towards our common goal of better more cost effective healthcare. For the large organizations thinking about the data, remember you and your family members are patients too. The following thoughts are offered as some basic guiding principles on data stewardship:
- Patients want control of their own data,
- Patients want to be able to share safely and securely share their data with all their care providers and participants (this will include family members and friends)
- Patients want granular control of some elements of the data limiting individual access to certain elements and areas
- Patients requires a full audit capability tracking who has access and has accessed their data
- Patients want to be able to easily and dynamically revoke access
- Patients will share their data for research and benefit of others but their contributions need to be recognized and accounted for
- Data cannot be used against Patients to deny coverage or increase their costs
What have I missed – what controls or limits would you place on your data that would make you more willing to share your data. What would stop you from sharing your data and why?