Marc Pierson’s Community Weblog

As we connect community partners to their health information and to one another we could create a dashoard like the one connected communities has in Whatcom.

It woud display items like communitymembers connected, physicians connected, ED patients connected, radiology clients connected, diabetics connected, chruch members connected, Over 65 connected, etc. They woud show numeric targets and percentage of way to target. They would only be posted when someone had made a commitment to reach a specific goal by a specific time.

This community has a long history of working together for the good of the whole. There is a long history of providing care for the underinsured. Organizations have been born from those efforts including Interfaith Community Health Center and Whatcom Alliance for Healthcare Access (WAHA). Working togeter for health information sharing and quality improvement across all health care organizations lead to the creation of Whatcom Health Information Network (HInet) as well as Whatcom Community Health Improvement Consortium (CHIC). Many organizations across the community are working together for health and they have organized Whatcom Coalition for Healthy Communities as well as a wonderfully informative website CommunityCounts. Of course Whatcom County Public Health Department and St. Joseph Hospital have played significant roles in most community-wide health discussions and partnerships as have most organized physician groups and the Whatcom County Medical Society. The community participated in an internatioal multi-year project to “redesign healthcare”–Pursing Perfection. The Institute for Healthcare Improvement managed this Robert Wood Johnson Foundation initiative. Recently Western Washington University has joined actively into efforts to improve the county’s health through the Critical Junctures Institute.

Will we need to have everyone use ITUNES or will some MS ap deal with podcasts? Jack?

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.