Marc Pierson's Community Weblog

The big question is whether one can post directly to a weblog from Outlook RSS news reader. If so, we have this baby whipped.

Jack, how close does WordPress come to being an RSS news reader?

Jack Mancilla has strongly suggested that I use WordPress as a replacement for Radio Userland and Manila.

http://www.wwpp.org/users/0000002/

I am very interested in having a community be able to watch statistics on who is being read and for individual users to be able to reference other’s posts into thier own–through an RSS new reader.

I will continue reading the documentation for WordPress and using this site to learn. It is clear that I can send my prior sites here as well as send this site elsewhere should I choose.

My “Idea Summary” for remarks and discussion at the California HealthCare Foundation's Chronic Disease Care Conference.

 

 

Our future will be determined by how our communities manage chronic medical conditions.

 

Systems supporting chronic care ideally will work throughout a community.

This is the scale at which patients experience care through multiple resources, multiple organizations, multiple providers, friends and family.

 

Patients are valuable co-designers of health systems and processes.

We include patients on all design teams.

The team knows who to invite, just encourage them.

Avoid advocates. Include active, experienced patients. They have compassion for us.

 

Care managers, of a special kind, are essential.

They are the often missing link (continuous relationship for complex patients).

o        Lifeguard (immediate action to save life and costs)

o        Navigator (negotiate access, remove delays)

o        Coach (increase patient activation and self management, support behavior change)

o        Translator (help physicians, patients, and families understand each other)

There is a large opportunity when we can connect paid care managers with volunteer community resources in support of a much larger group of patients.

 

Personal Health Records are an essential technology, but not as many organizations are thinking of them.

They support alliances and knowledge sharing for behavior change.

The best one's will be designed by patients and for patients with chronic conditions.

See www.sharedcareplan.org and http://www.wwpp.org/users/0000002/

Supports involvement of each person's virtual care team–the patient invites and controls access.

The PRINTED version, the artifact, stimulates the missing conversations. People talk about it. More productive conversations now occur–

Between providers and patient

Between patient and family

Between relatives at risk for similar conditions

They must be patient “owned” and patient controlled if they are to result in behavior change.

For maximum benefit and adoption it must not be limited or controlled by a part of the fractured health care “system”. It must remain functional–

No matter who your doctors are,

No matter whether your doctors choose to use it on-line or not.

No matter which hospital you use.

No matter which health plan you use.

In other words it needs to be a “community” supported tool for communication and for the involvement of patients and anyone that helps them with their chronic conditions.

 

 

 

 

Patient Involvement on Teams: Learning from a Community Collaboration in Whatcom County

 

Considerations: 

 

Some healthcare professionals have been tentative or fearful about patient involvement on their teams.  They are concerned that patients will be critical of healthcare providers, and expose the soft underbelly of our tenuous healthcare system.

 

But patients are true stakeholders and have proven to be great partnerships in care design and delivery.  They have a vested interest to ensure that communication is clear, possibilities and risks are explained, and access to information is timely and geared to what patients and family members need. Their input is most often practical, innovative, fresh, and simpler than what we ‘professionals’ envision.  And they can do one important thing we cannot do ourselves.  They can and do forgive the individuals—they recognize that the flaws are in the system.

 

“Patients” are people first, with life experience, preferences, resources and resource limitations, and direct experience with what we’ve determined they need from ‘the healthcare system’.  Although each of us may be patients or family caregivers at points in our life, and feel more vulnerable in those times, we have access to colleagues and have knowledge of the workings of the ‘system’ to have a different experience. 

 

We owe it to our patients,  ourselves, and healthcare professionals everywhere to include our key “customers” as we strive to improve healthcare to become more safe and satisfactory for healthcare providers and recipients alike.

 

A Simple Rule:

 

The simple rule is to have the folk who are going to form a team invite patients whom they know and whom they believe would be interested in the work to be done. It almost always works.

 

The more compulsive approach follows. Our bias is toward simplicity.

 

Steps for Patient Involvement on Teams:

 

1. Define Purpose of the team:

1. What the team is concerned about.

2. What the membership of the team will be.

3. Duration of the team, frequency and timing of meetings.

4. Expected outcomes–impact of the work.

 

2. Define Purpose of patient participation on this team:

1. Ask yourself, how will the outcomes differ with patient participation?

2. How will the patient experience the team?

3. How will the non patient team members experience change with a patient participating:

4. Do you need more than one patient?

5. Do you need perfect attendance? Can the patient select an alternate when they are unable to attend?  Invite more than one patient so that participation limitations due to exacerbations in illness, or travel don’t leave you without patient representation.

 

3. Team leaders or members nominate non-healthcare professionals, non-healthcare employees, for invitation onto team. (You can ask other managers who understand the work of this team to nominate patients for invitation.):
   1. Think about whether you want someone with experience as a patient, family member or both…
   2. Determine how to accommodate different levels of patient’s ability and interest in participation.  Some will want to take active role, some may prefer advisory role.  Physical functioning may limit active role for those with much to contribute, the richest, most articulate participants.

4. Interview (see interview template) and vet the patient. If possible have another patient who has successfully participated on a team participate.

 

5. Orient the patient.

1. Confidentiality

2. Mission, values, transformational aims

3. Show videos that are appropriate for orientation.

4. Team charter

5. Roles of other team members

6. Photos of team members with brief bios

7. Contact person and contact information for the patient

8. E-mail and document management

9. Acronym list and other background documents

6. Recognition

1. Personal

2. Public

 

7. Your program patient materials

1. Orientation packet

2. Orientation meeting format
3. Interview form

4. Meeting agendas, minutes

Interview Template

a.      Introductions

b.      Acknowledge how you came to invite them. Who nominated them?

c.      Explain the purpose of the team.

d.      Ask about their experience as a patient and discuss with them how their experience seems relevant to the team's work.

e.      Tell them something about the other members of the team, their team mates.

f.       Ask about their interest in this kind of volunteer work.

g.      Discuss logistics of meetings and communications.

h.      Ask about internet and e-mail access.

 

 

Bill Mahoney and I gave linked presentations at the Collaborative Family Healthcare Association's Seventh Annual Conference (http://www.cfha.net/) on October 9th as the closing plenary speakers. Our presentations can be found by clicking on the following links.

Bill is a PhD Sociologist who has been working within PeaceHealth for about seven years and he is focused on how people can dramatically increase their capacity for working collaboratively together.

Marc Pierson's presentation. (it takes a minute to download due to four photos in the presentation, sorry about that)

Bill Mahoney's presentation.

Mary Johnson, a librarian in Eugene, OR, speaks about her experience with The Shared Care Plan, a personal health record. Please take a look.

CLICK HERE

You may be pleasantly surprised what happens when patients get their own medical record that they can use and share as needed.

The work to create the Shared Care Plan originated from a Robert Wood Johnson Foundation Grant–Pursuing Perfection and was then supplemented by an AHRQ Safety Implementation Grant aimed at creating a single accurate medication list within a community and learning how to implement such a list. The patients in Whatcom County, WA, Eugene, OR, and Florence, OR, have all played an invaluable role in defining what they need and how to spread it. The patients have been and continue to be the designers. Now they are teaching us how to spread it to others.

 

 

Bonnie Parton is clear on the benefits that a particular personal health record has had for her family. Watch and listen to her for four minutes.

Click Here

Read more here: www.sharedcareplan.org and here www.patientpowered.org .

Here is the PowerPoint presentation that Nancy Stothart and I gave at the Washington Healthcare Foundation meeting in Seattle today.

When you click on this link it will begin the download of a pretty large Microsoft PowerPoint presentation that plays in the browser.

http://www.wwpp.org/static/gems/wwppDiscuss/PatientCenteredProcesses.ppt

 

Visualizing complex systems is difficult. Trying to navigate without a map is also a perilous undertakinng. Two years ago we created a mathematical model of the system which made the potential winners and losers clear. We have not made as much progress toward our promises and goals as we would like–we have had a plan but not a map.

I have been talking about Jonkoping County, Sweden for more than a year. They have mapped their health care system in one county and begun the process of whole system improvement–a cross multiple organizations. Here is a presentation that I put together after the first trip to Jonkoping.

Finding ways for lots of folks to focus on improving a system is a challenge. API and the County Council of Jonkoping, Sweden have done that.

We have built upon the work done in Sweden. It is interesting that the API (Associates in Process Improvement) methodology called Quality as a Business Strategy (QBS) translates well to the national Baldrige Award quality framework. Here is a first pass at matching their approach with Baldrige. If you want to see our high level map in three parts here they are: Healthcare Processes, Support Processes, and Driver Processes. One can even map the Chronic Care/Planned Care model onto this high level framework. On can also view the “mainstay” or key processes as a Clinical Microsystem as developed at Dartmouth. The trick will then be to locate the processes in the system, link them and then improve them.

Whatcom County created a map of it's healthcare system last May. We are beginning to move this work forward in various ways that I will report on in this web log as we make progress. The most exciting part is creating the map of patient processes as the “mainstay” of their own clinical microsystem (their homes and support networks) with the rest of us in support roles. That may be a major part of the future system of chronic care. Stay tuned.