Representation, Role, and ALS: Part III — The Steep Learning Curve

People living with ALS who are seeking to join ALS advocacy efforts face the daunting challenge of getting smart fast on multiple issue areas, some of which are exceedingly complex. We need to quickly acquire an understanding of, among other things:

• the disease itself;
• basic protocols of scientific research and clinical trials;
• debates over new clinical trial designs and research protocols;
• statistics, basic and advanced;
• state of the art survey techniques;
• biology, bio-chemistry, neurology, and genomics;
• the medical research currently being undertaken to develop therapies for ALS;
• the organizational landscape of actors working in and on ALS;
• the history of ALS advocacy, conflicts, therapies, and legislation;
• the politics, public policy, and legislation related to ALS, including preferred access and Right to Try;
• the policy making process related to legislation relevant to ALS;
• the regulatory role of the FDA;
• trends and best practices in patient advocacy and empowerment;
• funding modalities for ALS research;
• coordination initiatives in ALS research and data collection;
• coordination issues and opportunities within the ALS advocacy and fundraising community;
• the functioning of non-profits, including standard fund-raising and endowment practices and the role of boards;
• partnership arrangements between government agencies, non-profit funders, non-profit research institutes, and pharmaceutical companies;
• the interests, risk calculations, and drug development strategies of pharmaceutical companies;
• the role and impact of third party interest groups on ALS-related legislation;
• new developments in assistive technology;
• medicare and insurance issues related to pALS;
• The Veterans Health Administration and its support to veterans with ALS;
• wider issues related to the US health care system as it impacts pALS;
• financial and care support issues for families caring for a pALS;
• public policy and health care systems in other countries and implications for care; services and therapy access for pALS outside the US;

and so on… you get the picture.

Some of these topics can be mastered relatively quickly. But most cannot. Most are fields of knowledge that involve years or decades of advanced education and/or work experience. Most people working on ALS are specialists in one or a few of these issue areas, and have spent a professional lifetime working on them. The knowledge base needed to engage on these issues constructively is just not something one can casually pick up on the internet or at a weekend training workshop, though those can be good points of departure.

So pALS aspiring to play an advocacy role face an obvious problem. In order to equip ourselves with the necessary knowledge to play a constructive role, we need time – lots of time – to immerse ourselves in one or more of these issue areas. Yet time is the commodity we are most short of.  By the time we are minimally competent to weigh in on some of these issues, many to most of us are dealing with advanced disease progression that makes it hard to play a role.

In some cases, pALS already possess professional qualifications that give them a big leg up in understanding one or more of the issues listed above. We have pALS who are or were physicians, medical researchers, statisticians, biologists, economists, nurses, executives in pharmaceutical companies, health insurance executives, physical therapists, policy specialists, and a variety of other relevant professional backgrounds.  They are a great asset, and can quickly be put to excellent use.  Some share their expertise on blogs that are great guides for the rest of us. But this is a small sub-set of us, and even with these skills, applying them to the specific case of ALS can take additional time and training.

I’ll take myself as an example. As a political scientist with decades of experience in policy work, you might think that at least the policy-oriented issues would be in my wheelhouse and easily mastered. Wrong. I have worked on policy issues related to foreign policy and international development, not health care. They are worlds apart. When I told a colleague I was hoping to shift my professional energies to ALS policy work, her eyes got wide and said something to the effect of, good luck, health care policy is a lifetime specialization. I have books on my desk that I am plowing through to try to acquire basic competency in the field.  One, an award-winning book on the FDA, is 802 pages long (and devotes exactly one page to ALS, which is a very sobering reminder of where we stand in the big wide world of medical research). And the FDA is only one part of a much bigger galaxy of actors on the ALS scene. I have a lot of homework.

“A little learning is a dangerous thing.” We all know this quote and appreciate its meaning. I have spent the better part of a year trying to learn as much as I can about most of the issues listed above, and freely confess that I am now at that point where “the more I read, the less I know.” That is, I’m getting just smart enough about each ALS issue to appreciate how little I actually know, and how naive it would be for me to wade into some of the most complex policy and medical research design debates.  

Does this mean pALS should abandon the quest to play a role in ALS advocacy and research debates, and just leave it to the experts? Absolutely not. As I will argue in a subsequent essay, I think we have lots to offer, and absolutely need to be at the table in discussions about ALS research, public policies, care services, and the position ALS organizations take.

I will also argue that for many of these issue areas we don’t need to be expert, we just need to meet the “good enough” criteria – we need to know enough to play a constructive role. We don’t necessarily need to be in a position to provide answers — we just need to know enough to ask the right questions, or mobilize to get an issue on the front-burner for policy-makers and then let experts take over from there. We also need to know enough not to get played by parochial interest groups looking to use us to advance their own agendas or line their own pockets.

But we need to be very clear-eyed, precise, and modest about what we do and do not know, what the knowledge threshold is for basic competence, and what roles we should and should not play.  We need to treat the concept of patient-centrism pragmatically, not dogmatically. Above, all, we need to enter into these discussions with a “healthy” respect for science and expertise (healthy meaning critical but not dismissive).

I say this because some ALS advocates appear to want to solve the “steep learning curve” problem by simply minimizing the importance of expertise at all, or by arguing that the requisite expertise is something that pALS and others can acquire quickly. Those are assumptions that worry me because I believe they set us up for failure and embarrassment, and risk reinforcing the view among some experts that our involvement creates more problems than it solves.  If we’re going to engage, we have to get it right.  And getting it right involves doing a lot of homework.

In the next essay I try to unpack the concept of “patient centrism” and try to identify areas where pALS have essential or useful roles and where we may not.