Marc Pierson’s Community Weblog

We, in Whatcom County, WA, are poised to create the functionality envisioned here.

This can be viewed as a patients’ manifesto (a la the Clue Train Manifesto), a request for an ideal experience of care:

I ask you, at each step, in each phase of the acute healthcare process, while attending to my body, to please:

Personalize, Humanize, Demystify (PHD) my experience of your caring.

1. Personalize the acute healthcare encounter.

·        We are not all alike. What works for the last patient may not work for me.

·        Make it about me. Make it fit my needs and my situation.

·        Do what you say you will when you say you will. Don’t make me wait on you.

2. Humanize the acute healthcare encounter.

·        I am not an inanimate object being serviced. I have a story and so do each of you.

·        Put my face and the face of my friends and my pets and my places into the encounter.

·        Put your names, your faces and your human places into my world.

·        Decrease the pain with shared knowledge, your compassion, and medications.

·        Tell us what worries you about the situation. Tell me what my family, friends, and I can do to help you take good care of me.

·        Be honest with me. Tell me what is dangerous.

·        Help connect me with people who know what this is like, people willing to share their experience with me. People that I can help too.

3. Demystify the acute healthcare encounter.

·        Make sense of the arcane, the technical, and the complex for me and my family.

·        Give us spatial maps to navigate your buildings and knowledge maps to navigate our health journey.

·        Give us the diagnoses and the support to understand what it will mean to us.

·        Explain what the machines do and what the tests are for–when I am able to hear it.

Give us the tools for each phase of care, to stay in touch, to know we are on the right path, to know who knows what and who is going to do what by when:

REGISTRATION

1.      Connect me to the Shared Care Plan, my electronic support system, as a byproduct of collecting my registration information. This means register me for a SCP and HealthVault. If I am already connected, use my on line information to update your system.

2.      Place your instructions to me in my SCP on-line (as well as in paper) so my family can help me prepare.

3.      Help me connect my family members to my SCP. Automatically add people to My Care Team from the registration process.

4.      Arrange to remind me and selected family or friends by secure e-mail of what we are supposed to do to use these new tools, including how to connect home health devices, such as glucometers, to the SCP and HealthVault.

PREADMISSION

1.      If I already have a SCP, please review About Me before asking a lot of questions.

2.      Give me an internet enabled wireless tablet PC (Mac Book? with camera and wireless connectivity) to use until we are finished working together on this whole episode of care.

3.      Give me online and on PC multimedia support to understand what is going to happen and to be as ready as possible.

4.      Help me and my family to understand the value of the SCP generally and specifically for this episode of care. Provide this support on-line and with a “wizard” in the SCP.

5.      Remind us that the SCP provides information on my conditions and my medications.

6.      Help me understand what parts of my Shared Care Plan will be of most help to us as we work together during my hospital stay.

7.      Assure me that the preferences I put into About Me will make a difference during my stay. My dietary preferences will be honored. My difficulties with hearing, vision, and language will be compensated for. People will actually be interested enough to look at photos of my family, etc.

8.      Help me keep track of what remains to be completed in the SCP by me and my family.

9.      Teach me how to help you with infections before I arrive and during my stay — hand hygiene.

10.   If I or my family is non-English speaking, teach me about your Interpreter Network prior to my arrival. It will decrease our anxiety.

11.   Ask me questions (validated patient surveys) that help us both understand how much responsibility I am ready to take (patient activation measure, depression measure, etc.) and what special needs or risks I may have (Health Risk Assessment, risk of falling, etc.)

12.   Encourage me to include photos of friends, families

13.   Create a calendar in my SCP that me and my family can see that guides us in getting ready for this encounter and that keeps me and my family informed about what is coming and what we can do to help.

14.   Ensure that I and my family can communicate securely with you about my upcoming admission.

15.   Encourage me to state my concerns and fears in my SCP and promise me that people will help me with them during my hospitalization.

16.   Encourage me to update and verify my lists of medications, allergies, immunizations, medical conditions and my advanced directives prior to admission and assure me that people will pay attention to this information.

17.   Explain to me how the SCP will help me during the transition of care after the hospitalization. Encourage me to get “my care team” connected to my Shared Care Plan before my discharge, even before my hospitalization.

18.   Useful information about my bill and my insurance coverage will be provided.

EMS SYSTEM ENCOUNTERS

Present critical clinical information to the first responder EMTs and paramedics as soon as possible, even before they arrive at my house.

ADMISSION

1.      If I have not benefited from the PREADMISSION services, then help me and my family catch up now.

2.      Review About Me in my Shared Care Plan.

3.      Review my medications. If we agree that my medication list needs to be changed, help me change it on my SCP. Same thing for my allergies and immunizations.

HOSPITAL STAY

1.      When you know the next steps for me in the hospital, this will be added automatically to my SCP as well as a new page where nurses place updates for me and my family in the SCP at least daily so we can discuss and keep abreast of what is happening.

2.      Family members can easily and securely chat (text, audio, video) with me and with others in my hospital room.

3.      Family members can easily place documents, photos and audio and video clips into my SCP during my hospitalization.

4.      Communication with staff and feedback to staff will be supported through the Shared Care Plan.

HOSPITAL DISCHARGE

1.      Discharge instructions are added to my SCP as documents; but also as active instructions in a calendar with reminders and connections to my family and in some cases to a care manager at the hospital or even my doctor or his nurse.

2.      My medication list will be updated, with my permission and assistance, based upon changes during the hospitalization.

3.      Key laboratory values will be added to my shared care plan (first and last values)

4.      Useful information about my bill and my insurance coverage will be provided.

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POST HOSPITAL DISCHARGE

1.      Critical communications will be tracked for completion or closure. Actions taken or not taken relative to the Transition of Care Calendar will be potentially available to a care manager or even my physician or his/her office staff.

2.      My hospital discharge summary and operative notes will be added to my shared care plan.

3.      I may be encouraged to track my Patient Activation Score and Depression Score to help others support me.

4.      I will be encouraged to give the hospital feedback through an online “Patient and Family Experience of Care” survey.

5.      I will be able to send messages securely to staff who cared for me.

6.      I will be able to record important information for myself and for my physician and know whether to expect them to see it.

7.      If needed I will be able to place photos of my wound, etc. in the SCP and know whether to expect my physician to see it or not.

8.      If needed I will be able to video conference with a care manager or physician.

9.      If needed home monitoring devices for medication usage, blood sugar, anticoagulant effect, pulse, blood pressure, or heart monitoring will be provided and connected to my SCP. Alerts may be provided to me, my support network, or in some cases to a care manager or physician.

10.   My laboratory values will be sent to my SCP, and I may choose to have secure e-mail alerts that they have arrived.

11.   A valuable on-line wellness program (SimplyWell) will be made available to me and integrated with my SCP for one year free of charge. My exercise watch connects to these on line programs through HealthVault.

12.   I will get secure e-mail alerts when an electronic prescription has been created for me and can be added to my SCP.

Personal Health Management Systems–Conumer-centric, Consumer-controlled & Community-situated.

Well that is a mouth full. This rather nuanced concept has emerged and clarified itself over the last 7 to 14 years in Whatcom County, WA.

We believed that we were patient centric–thinking of (and for) the patients way back in 1993 when the idea of a Community Health Record began forming into a reality. We developed one of the most electronically integrated communities in the USA over the next seven years. THEN we invited patients to talk with us directly–to have their own VOICE at the health professional’s table. Once they trusted that we were seriously interested in their concerns, not just our own efficiencies, they began to design the information and communication system that would serve their interest primarily, and our interests secondarily. (Isn’t that the way it is supposed to be anyway? In his book, The Careless Society, Community and it’s Counterfeits, Northwestern University professor John McKnight describes the consistent dynamics which invert the client into a servant of the professional enterprise. If these dynamics and their consequences are of interest to you, Donald Schon’s book, The Reflective Practitioner, offers potential solutions to McKnight’s dilemma. I digress.)

A note on the terms “patient” and “consumer” — The idealized relationship between physicians and clients does not always turn out ideally. Asymmetries of power and knowledge can tip the ideal upside down. “Consumer” certainly leaves much out of the ideal relationship, but it does make it clear who is supposed to be in charge. I would love to know of a better term that keeps the client’s interests (from their perspective) truly as the object of the enterprise. 

“Consumer-controlled” is a term that creates anxiety among professionals. (Keep in mind that HIPAA gives professionals broad authority over the patient information, without much input or oversight by patients.) The patients were very clear with us. They need their own records and their own communication tools in order to play their role in their own health. They ask us to help build an information system subject to THEIR CHOICES about who they share what with for what purposes. We began building the Shared Care Plan which evolved into Congral’s Personal Health Management System (PHMS). 

“Community situated” — What is the scope and scale most useful to consumers? Most efforts to create PHRs are driven by interests that are not entirely coincident with the consumers’ interests; e.g. providers, health systems, payers, employers, or internet application hosting providers. Currently the people who must interact  to create health and to manage illness are co-located in geographical communities–not exclusively but by-and-large. I try to keep in my mind that human meaning is created socially and generally in face-to-face interactions. So, any Personal Health Management System needs to be situated in, or fit into, the community in which the consumer lives. The PHMS needs to add value for the key stakeholders in ways that encourage interaction–because the real goal is behavior change which comes from new meanings. The stakeholders, for a variety of reasons, should ideally include–consumers, their friends and families, physicians, pharmacists and other providers, hospitals and other health care institutions, employers, the emergency management system, and finally government and various agencies and membership groups.

“Personal” — Everyone who would hire their own lawyer needs to have their own health information management database, controlled by them for their own ends. The patient’s health management system has different interests than the physicians’, the payers’, the employers’, the hospitals’. The most straight forward example is medication lists. Patients want to know what they are taking. Physicians want to know what they prescribed. They actually cannot afford (practically or legally) to know what the patient is taking, unless they are paid to manage this new and ever changing information. Of course physicians and hospitals etc. need their own records and management databases. Why shouldn’t patients have similar useful tools under their own control? 

“Health” — Currently the US health industry is best described as an illness industry, and maybe that is just fine. Health should perhaps be the domain of others, of communities, churches, governments, popular movement–rather than costly professional experts, highly trained to manage when things go wrong–disease. The PHMS should enable healthy decisions and facilitate social interactions which support healthy life styles. Employers certainly have aligned incentives with consumers to manage health. Employee wellness programs should be part of PHMSs. Enlightened communities should underwrite such integrated wellness programs for the population. Everyone benefits.

 “Management System” — It is about knowledge, decision making, measurement and trending, communicating, encouraging, alerting, and closing loops. It must enable systems of learning and behavior change and mutual support. Ideally it connects with other stakeholders to create the first system of health, outside of a very few successful HMOs.

 Then you need an affordable (free) infrastructure for secure, private storage of interoperable information. Microsoft Health Vault.

 There are many vested interests who will not favor this amount of choice for consumers. They will resist the untethering of consumers from the business who hope to bind them and reduce their choices.

 Who will win the struggle to prevent consumers from accessing their own clinical information? I am sure the consumer will prevail. In the long run even those industry segments that now are disinclined to support such freedom for consumers will benefit from this turn of events. And of course all of us and our children will benefit from this new found freedom to choose.