Enhancing Health Care With Patient & Family Involvement

Collaboration and working together are skills we learn at an early age. Although not new ideas in their own right, we are now working to bring these important concepts into conventional Western medicine as research shows that partnerships between health care providers across a variety of disciplines and backgrounds, and between providers and the patients and families they serve, lead to better outcomes.

The Greatest Untapped Resource in Health Care

I believe that the greatest untapped resource for improving health care is the knowledge and wisdom of individuals, families and communities who face challenging chronic health issues in their everyday lives. Consider, for example, these questions: How does someone recently diagnosed with diabetes really rebuild his lifestyle across diet, physical activity and disease management? Where is the line between supportively reminding your daughter to check her blood sugar levels and being a nag? How can a wife avoid burning out from supporting a husband whose pain is chronic and whose complaints are never-ending?

HIPAA laws restrict health care providers from connecting a patient who has learned how to effectively manage a chronic illness with another patient who has just been diagnosed and is struggling with a great deal of fear and uncertainty. While these privacy mandates prohibit introducing patients and patients’ families to others with similar challenges, uniting them allows our real “experts” to share their “real world” wisdom not accessible through professionals’ textbooks or journals.

The Citizen Health Care Model

Our challenge, however, does not only rest in figuring out how to make these connections. Conventional methods of designing, implementing and evaluating care plans tend to exclude the voices or involvement of the people they are created for. Rising to meet these challenges is where the “Citizen Health Care” model comes in. This model evolved as I, alongside my mentors and colleagues, began to observe how professional expertise fits into a much larger mosaic of care. Citizen Health Care is a different way of working; providers work WITH patients and families (not ON them). It highlights the role of health care professionals to not “fix,” but instead to collaborate with patients and families. Much of conventional Western health care is provider- and expert- driven. Citizen Health Care flattens this hierarchy and advances all participants’ respective contributions.

Co-owning Your Health

The Citizen Health Care model calls for patients and families to become active participators in their health care. Patients and families have wisdom that is not “medical” or “technical,” but still is as equally important as their health care providers. I am a citizen of health care and so is my patient as we work together to offer, and fit together, different pieces of a larger, more complicated picture of health. Solutions we design are OUR (patient’s, family’s, health care providers’) co-owned successes. Ultimately, the outcomes we achieve are things that none of us could achieve by ourselves.

A family’s involvement in a patient’s health care can lead to numerous benefits. Here are several tips for facilitating involvement.

For health care providers:

  1. As a professional, if patient shows up alone to an appointment, ask questions that communicate your sensitivity to how others are affected and/or involved. Ask questions like: What does your wife think about all of this? Does your family usually eat together? How do they feel about these new foods we’re talking about? Are you exercising by yourself or can someone go with you?
  2. Give the option of bringing a family member into the appointment instead of sitting out in the waiting room. Encourage involvement and team work.
  3. Open up dialogue by urging patients and family members to brainstorm solutions together. For example, if somebody who is struggling with obesity needs to engage in more healthy dietary and physical activities, ask everyone in the room to think about fun ways to do this collectively. When they discuss and decide that taking weekly trips to the farmer’s market and/or walking together in the evenings is a good answer, the family now “owns” the solution. While the very same thing could have been suggested by you as the provider, now it is personal and therefore more likely to stick.
  4. Consider getting involved in, or creating, a Citizen Professional project. These projects encompass professionals partnering with community members (e.g., of patients/families living with a chronic illness) around a “pressure point” that represents a shared concern that everyone involved is passionate about. These initiatives tend to function outside of standard care practices, and can thereby facilitate supportive connections beyond those available within a conventional clinic’s procedures. For more information about the model, how to learn it, ongoing projects and related resources, check out: www.citizenprofessional.org.

For patients and families:

  1. Understand that we are all social creatures. While the experience of illness can feel isolating, it is important to remember that you do not have to “go it alone.” Ask family members and/or friends for their support and involvement. Talk with them about what this can look like as you balance interpersonal connection with personal autonomy.
  2. When meeting with your health care provider, talk about how others are affected by and involved in what you are struggling with. Ask (even insist) that they come with you to your visits so that they are on-board with what you discuss. This can facilitate the very connections described above in combating what can so easily feel isolating. After all, going to a doctor’s visit with somebody is much different than the way we usually do this (i.e., by ourselves). Sharing in this experience communicates a great deal of trust and confidence between loved ones.
  3. Explore, with your provider and/or supportive others, ways to connect with patients and families who share in similar experiences relevant to your health. These venues can include group visits within a conventional care clinic, support groups, educational forums, health fairs and any variety of community events.
  4. In the same vein as that described above for providers, consider getting involved in, or creating, a Citizen Professional project.

By integrating these different types of wisdoms—patient, family, health care providers of various backgrounds and specialties—everybody wins.

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Tai Mendenhall, Ph.D.

About the Author

Tai Mendenhall, Ph.D.

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