Bushwacking: Four stages of becoming a family leader

Tomorrow morning I’m going to lead a round table discussion for special needs parents on using advocacy skills for systems change, also known as family leadership. If you’ve known me for a while, you realize how ironic this is. A handful of years ago, I was anything but a leader. I was so reluctant to take on the role of special needs mom that I wasn’t even a follower. But now here I am. How did this happen?

Blazing a new trail

The first few years of parenting my child with complex special needs was like stumbling along an unmarked trail in the woods. I went in circles, covered in scratches, stumbling into poison ivy.

Then after a while I crossed paths with some more experienced hikers and started figuring stuff out—which mushrooms are edible, how to navigate using moss growing on the north side of trees. I had to let others know these gems! And so I stopped, turned toward the direction I just came from, reach out a hand to help those behind me could catch up.

Until finally, I knew the woods well enough to see that the trail was never going to take my family where we wanted to go. Even if it was marked, even if it was cleared. So I started blazing a new one.

A path toward leadership

While most people think that leaders are born to lead, that’s not always true. More often, they’re grown. This growth pattern is an expansion: an addition of skills, experience and expertise that allows us to help ourselves and eventually help others. Fellow special needs parent Eileen Forlenza calls it a progression to leadership. I’m not so sure it always moves forward; a new situation arises—a new symptom, a transition—and we feel like beginners again. But even so, if we step back far enough and squint, this pattern of growth toward leadership can be discerned.

Stage 1: Becoming ready to advocate

In all of the stages of family leadership that I’ve read about I’ve never seen this one included, yet it’s the most important. For many people, including me, it can be difficult to get in the driver’s seat. It doesn’t mean that we are neglecting our children; when I was in this phase, I was probably at my busiest and most stressed. I just couldn’t allow myself to get immersed enough to get to the heart of what my child really needed. It took several years of learning stress management and coping skills to have the courage to move into advocacy meaningfully. (At the same time, I often find myself back here as if I’m learning this for the first time.) Some activities of this stage:

  • Becoming accustomed to unexpected demands
  • Letting go of our expectations
  • Working through issues that prevent acceptance
  • Some useful skills: self-care, stress management, self-reflection
  • Taking care of other acute situations, i.e. financial, legal, emotional

Stage 2: Advocating for your family

In this phase, we learn to advocate for our own families. Some things we focus on:

  • Understanding the diagnosis, the symptoms and the treatments
  • Knowing our rights
  • Learning about resources & info via listservs, magazines, e-newsletters, trainings
  • Navigating the system and coordinating all aspects of care
  • Some useful skills: research, listening, organize information, cooperation, understand medical, educational and legal concepts

Stage 3: Advocating for our community

At a certain point, we learn enough about how to get our own child’s needs met but become sad or angry thinking about how many other families are still struggling. In an effort to pay it forward, we often engage in activities that aim at making it easier for others to make progress. And so we spend time:

  • Giving feedback: participating in surveys, focus groups, advisory councils, calls and emails
  • Sharing resources & information with other families via listservs, magazines, e-newsletters, trainings
  • Helping others navigate the system
  • Some useful skills: writing and public speaking, telling your story, supporting and coaching others

Stage 4: Advocating for system change

With more knowledge and experience comes the realization that the existing medical, educational, legal and society systems are simply not adequate to meet the needs of all people (especially our special kids), and yet they should be. At this point, we want to not only help other families make progress, but change the nature of the system itself. We start focusing on:

  • Lobbying politicians and representatives for change
  • Participating in the design, implementation and evaluation of system change
  • Mentoring others for leadership: A great leader doesn’t create followers; they create other leaders
  • Making the system easier to navigate
  • Some useful skills: lobbying, understanding systems, developing programs, mentorship, collaboration

Becoming a leader can feel intimidating. It requires new skills and courage at every step. It can be helpful to notice that leaders aren’t “born with it,” but are called to it. We can learn these skills. If we’re lucky, we have support and friendships for companionship along the way.

Some parting questions: Where are you on your path toward leadership? Notice how you can be at many places at once. When do you feel most like a leader? What made you ready to advocate? Who are the mentors who encourage you to lead? What skills do you want to learn so that you can be more comfortable leading? How can we support each other?

Never doubt that a thoughtful, concerned group of citizens can change the world; indeed, it’s the only thing that ever has.
Margaret Mead

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Answering questions together

Last weekend I travelled to Washington DC to help create a new model for government-funded medical research. As a parent of a child with special needs who spends most of my time thinking about children with special needs, this 150-person patient summit was one of the most diverse groups of patient stakeholders I’d ever been part of. People representing arthritis, cancer, and kidney disease, people representing geriatric and pediatric issues, people whose medical issues came into their lives as a result of a tragic medical error or because of the body’s natural tendency to try new things.

We were invited there by an innovative organization, the Patient-Centered Outcomes Research Institute, or PCORI. Funded by the Affordable Care Act, PCORI aims to do research differently: to pair patients and researchers to answer questions that patients and families really care about. The idea of professionals doing work with patients instead of to or for them is reaching higher and higher levels of our nation’s health research priorities. In other words, this is a really big deal!

Even leveraging the collective lived experience of the attendees gathered by PCORI’s committed leadership, creating a research model that supports authentic partnership is going to be tough. Here are a few challenges I can see from my experience supporting patient-(and family)-professional partnerships on a number of levels and some ideas for addressing the challenges:

  • Challenge: Many professionals and patients don’t yet appreciate the innovation that patient-professional partnerships bring.

“We’re all patients,” is a common refrain from professionals when entering into collaboration with patients for the first time. That may be true, yet if that were enough, our health care system would have achieved a level of patient-centeredness that would render initiatives like PCORI unnecessary. Including people who are able work collaboratively while still retaining the unique vantage point of their own stakeholder group is critical to producing ideas innovative enough to handle the challenges our health care system is facing.

Suggestions: While PCORI’s current structure of supplying large grants (nearly $1m each) to a small number of projects has the opportunity to create some huge research results, funding many smaller projects in the form of micro-grants might do more to flood the field of research with thousands of opportunities to experience the “magic moments” of partnership innovation, encouraging real culture change.

  • Challenge: Throughout history, trying to insert a less powerful stakeholder group (patients) into the paradigm of the more powerful one (research) often results in paternalism and tokenism.

It takes a skilled, supported patient to not become acculturated to the professionals’ perspective when they’re sitting in their conference room or in their labs. Patients are often invited to partner and then sent signals that their ideas are unreasonable, off-topic or too aspirational—basically, that they “just don’t understand the reality of the situation,” or the professional’s own paradigm. Eventually, they become tokenized, or present so that the organization can claim credit for including consumers without actually changing.

Suggestions: PCORI must aggressively equalize the power dynamic from the outset. Make parity of participation (equal ratio of patients to all other stakeholders combined on a project) and compensation a requirement—including in their own leadership. Give higher scores to grant applications that offer patient-generated ideas and patient-driven projects. Teach the research community partnership skills. Putting patient groups in charge of awarding the funds would be a radical approach but could even out the power dynamic effectively.

  • Challenge: It’s easy to treat patient engagement as an ancillary function of whatever it is you’re trying to partner around.

When patients are invited into existing professional structures to partner, professionals often think that patients are the only ones who need to learn new things, that cultivating a healthy partnership is the job for a designated patient leader, or that partnering is a value deserving of resources only after the real work is done.

Suggestion: Instead of referring to “patient engagement,” frame the entire concept as “patient-professional partnership,” and make the partnering as important as other work. Accept that both sides will require training, new skills and new capacity to partner successfully. Select researchers and other stakeholders who demonstrate a commitment to partnership. Rather than assign a single person (usually a patient leader) to head up “patient engagement,” partner a patient and professional to model collaboration and manage this function. Similarly, partner patients and professionals as co-leaders throughout the organization to ensure that partnership stays central to the mission of the organization.

  • Challenge: Inadequate compensation creates circumstances in which only educated, engaged, connected patients are likely to participate.

Patients and caregivers are not often salaried employees. Participating in partnering often costs money: for childcare, additional nursing care for themselves or a family member or in lost income. When time is not valued through payment, only a lucky few have the means to participate. Also typical is that these patients’ contributions are devalued because the patients aren’t “regular people”—they’re too activated, navigate the system too well, or aren’t diverse enough.

Suggestion: PCORI can model transactions that will facilitate a more diverse participation by paying participants their time as well as expenses, and for participating in every role in their organization, including as grant reviewers and on their board and in leadership.

  • Challenge: The medical model paradigm favored by medical research, with its focus on body parts, diagnoses and disease labels, may be a source of conflict with patients.

Patients often take a radically more holistic perspective to medicine than researchers or even clinicians. Patients’ health care frame of reference is often a life course approach, a public health mindset and a medical home model blended into one, dismantling the silos of medicine, education, employment, transportation, housing, recreation and spirituality and blurring the lines between their own health and their families’ well-being.

Suggestion: Expand the scope of viable research questions to include non-diagnosis related questions, like identifying key activities of patient-professional partnership, the mechanisms of patient activation, care coordination, shared decision making, the impact of peer-to-peer (patient-to-patient and family-to-family) relationships, and the impact of social determinants on health. Fund projects agnostic to disease label to build a patient-centered research infrastructure: resources for patients on how to conduct research, access for patients on critical functions like an IRB and a venue for publishing, training on how to recruit their own researcher, and resources for all (not just PCORI) researchers on how to partner with patients.

PCORI leadership seems dedicated to doing this right. As a patient and family member, I recognize what a culture shift PCORI’s existence represents.

Do you have a research question that you’d like to submit to PCORI? Would you like to be a PCORI grant reviewer? Do you want to learn more about what PCORI does? Get involved and shape the future of medical research. Together we are better.

The Society for Participatory Medicine’s blog is also collecting  posts from other participants at last week’s event. Check them out.