Marc Pierson’s Community Weblog

 

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.