Health Hackers & Citizen Scientists Shake Up Medical Research

Whether you call it Health 2.0, Medicine 2.0, or e-Health 2.0, the Internet is changing medicine in ways that challenge the status quo. This article explores how a group of amateurs who call themselves “health hackers” and “citizen scientists” are trying to use the Internet to connect with other patients, run experiments, and conduct clinical trials on their own diseases.

Dr. Gunther Eysenbach states “Medicine 2.0 applications, services and tools are Web-based services for health care consumers, caregivers, patients, health professionals, and biomedical researchers, that use Web 2.0 technologies as well as semantic web and virtual reality tools, to enable and facilitate specifically social networking, participation, apomediation, collaboration, and openness within and between these user groups.” One review examined 46 different definitions of Health 2.0, and Eysenbach’s definition does not emphasize a key component of the concept: amateurs can use these new Internet tools to do work that in the past was only done by professionals. (1)

A dramatic example of patient-initiated research highlights the moral and medical implications of changing the way that traditional scientific research is conducted. In 1995, Jeff Getty, a late stage AIDS patient and AIDS activist, was the driving force behind personally receiving a xenogeneic baboon bone marrow transplant with the hope that the baboon’s natural AIDS resistance would save his life. Although the baboon marrow cells did not grow in his bone marrow, Getty seemed to improve and lived until 2006 when he died of heart failure after treatment for cancer and AIDS. (2) AIDS patients were among the first to self organize, review the scientific literature, choose treatments, and demand research. (3)

An abstract at the 1996 International Conference on AIDS stated that the Getty experiment discovered that “aggressive patient involvement from the earliest stages of scientific investigation can aid cutting edge research; regulatory obstacles can be overcome and the research process can be expedited.” (4) Dr. Steven Deeks of UCSF who led the Getty experiment stated, “Jeff was just hanging on to his life. He inspired us that a risky and aggressive intervention was worth a try.”(2)

Others worry that patient-initiated research may not generate scientifically valid conclusions about treatment. Harlan Krumholz, a cardiologist at Yale, is supportive of individual patients learning about what helps them cope with their disease, “but to find something that I can put in a textbook and encourage everyone to offer to patients requires a stronger evidence base.” (5) Citizen scientists may not collect data rigorously enough or may not understand how to interpret statistically reliable results. The complex rules governing bias, conflict of interest, informed consent, access, and privacy that Institutional Review Boards (IRBs) insist that academic researchers follow do slow down studies. But, these rules also protect patients from receiving treatments like bone marrow transplantation for advanced breast cancer and thalidomide for nausea that harm patients.

The Life Raft Group is a nonprofit online for patients with gastrointestinal stromal tumors (GIST) tumors; by encouraging patients to have their tissue tested for the c-kit mutation, they have identified many patients whose tumors in the past were misdiagnosed as leiomyosarcomas with a poor prognosis. The Life Raft Group also receives funding from the pharmaceutical industry and so conflict of interest and bias may be hard to exclude from their work.

Charles Blanke, MD, Director of Gastrointestinal Oncology at the Oregon Cancer Institute summarizes the advantages and disadvantages of their patient-initiated approach:

“This is powerful and compelling work! I remain incredibly impressed by the data-coordinating abilities of the Life Raft personnel. I see the major purpose of this sort of data as hypothesis generating. Unfortunately, it cannot be free of bias and thus cannot stand by itself, but it certainly can point investigators and the Company in the right direction and let us know what we need to be looking at more closely. Thus, its importance cannot be overstated. (6)”

PatientsLikeMe is an online amyotrophic lateral sclerosis (ALS) community that reported on how news of a small Italian study using lithium to treat the disease was diffused through the community and led to a patient-driven observational study of lithium and ALS. The study concluded, “Patients with few options will not wait for normal science to design studies, recruit patients, measure, analyze, and report.” They also noted that some worried that such research “may not be reliable or credible.” (7)

The skeptics point out the case of Neurontin, an anti-seizure medicine, which was touted on the 23,600 ALS disease sites as possibly beneficial. So many patients started taking Neurontin that scientists conducting trials of two other drugs had trouble finding enough patients for their control groups. When Neurontin was finally studied, it failed to benefit ALS patients. (8)

Sharon Terry, vice president for consumers of Genetic Alliance and founder of PXE International, has tried to bridge the gap between traditional science and patient-initiated research. When her two children were diagnosed with the rare disease PXE (eye diseases, heart disease, and gastrointestinal bleeding), she raised money for research, established a registry with 2000 patients, created blood and tissue banks, and published 83 peer reviewed articles with medical professionals. Reacting to some scientists who did not like sharing data with others, Terry and the University of Hawaii researcher who discovered the PXE gene using PXE International donated tissue filed a joint patent application. Terry says, “Any successes belong to the patients, not to an individual scientist or hospital.” (8)

Another example of online communities working with traditional scientists has been the two new Mayo Clinic studies of Spontaneous Coronary Artery Dissection (SCAD), a rare and poorly understood heart ailment. Using social media tools like Facebook, twitter, and YouTube, Mayo Clinic is building a database of SCAD patients and a biobank of blood samples from patients with SCAD and their close relatives. (9) Laura Haywood-Cory and Katherine Leon initiated the SCAD research after they connected on an Inspire moderated online community. (10)

The experience of Melanie Swan who has developed a smartphone app to allow patients to identify correlations between drugs and genes highlights the tension between citizen scientists and academic researchers. When she presented her data on vitamin B and homocysteine levels to a Scripps Research Institute Conference, many of the participants labeled her work “soft” science. Dr. Eric Topol of Scripps who is a supporter of patient initiated research noted, “The bar has been raised considerably for what scientists deem acceptable evidence for making changes to one’s health.” When Swan went back to her online community to suggest a more rigorous approach, many of her fellow citizen scientists did not want to introduce so much bureaucracy. (5)

The first page of the CureTogether website invites the visitor to “get access to millions of ratings comparing real world performance of treatments across 589 health conditions.” There is a report on what treatments 800 arthritis patients find most useful; 2,800 patients with acid reflux disease share their experience with various medications; another section documents the experience of 29 patients with Crohn’s Disease. One patient is quoted on the site as saying, “I just wish doctors got this information and applied it.” (11)

The tension between the traditional approach to medical research and patient-initiated research can only be resolved by cooperation and two-way communication between the two groups. The Mayo Clinic and PXE examples clearly show that both groups can benefit by meaningful and respectful partnership. The AIDS and ALS examples demonstrate that patients with few options and new Internet tools will continue to push the traditional research community to be open to new ideas, new approaches, and new possibilities. Gilles Frydman, founder of the Association of Cancer Online Resources, has stated, “Better-informed people are more willing to participate in the advancement of science. Those patients taking Gleevec do not consider themselves guinea pigs. They are recipients of experimental medicine.” (8)

References

1. http://health20.org/wiki/Health_2.0_Definition

2. http://www.nytimes.com/2006/10/16/health/16getty.html

3. Epstein S. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: UC Press, 1996.

4. http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102217979.html

5. http://online.wsj.com/article/SB10001424052970204621904577014330551132036.html

6. http://www.jopm.org/evidence/reviews/2009/10/21/patient-driven-research-rich-opportunities-and-real-risks/

7. http://www.ncbi.nlm.nih.gov/pubmed/18999176

8. http://www.spencerhawk.com/spencerhawk/pdfs/CitizenScientists.PDF

9. http://newsblog.mayoclinic.org/2011/08/17/scad-spontaneous-coronary-artery-dissection-studies-at-mayo-clinic/

10. http://www.marketwatch.com/story/inspire-report-details-scad-ladies-patient-empowerment-story-2011-10-13

11. http://curetogether.com/

Joy's Law Means Hospitals Need to Look for Partners

A recent trip to Denmark to speak to an IT conference reminded me how important it is for hospital executives to remember Joy’s Law. Bill Joy famously observed “No matter what business you’re in, most of the smart people work for someone else.” There should be a corollary that states “No matter what industry you’re in, you can learn a lot from people in other fields.”

If you take Joy’s Law seriously you start to think beyond the boundaries of your hospital system and realize that there is much to learn and borrow from others. Don Tapscott and Anthony D. Williams in Wikinomics (New York: Penguin, 2008) describe how cutting edge companies outside of health care are benefiting from mass collaboration made possible by digital tools.

To continue reading this post go to this link for original blog on Hospital Impact:

http://www.hospitalimpact.org/index.php/2011/11/16/title_33

What I Learned in Denmark II: The Online Health Track

In a previous blog post (http://kentbottles.blogspot.com/2011/11/what-i-learned-in-denmark.html) I discussed how much I learned at the J. Boye Aarhus 11 Conference in Denmark from a fabulous opening keynote by Michael Edson and from presentations on search and going mobile. Today I would like to summarize the discussion at the Online Health Care Track that was expertly moderated by Lau Hesselbaek Andreasen.

In my opening remarks I revisited some of the themes from Edson’s brilliant keynote and tried to understand what they might mean for health care. Kathy Sierra’s observation that the digital world makes “every user a hero” was extended to embrace the idea that “every patient is a hero.” The concept that the patient is the most underutilized resource in health care was introduced, and social networking sites like Patients Like Me were given as examples of mass collaboration in health care that results in patients learning from others with the same disease and presenting themselves to physicians as empowered and engaged patients. Lawrence Lessig’s observation that synchronicity is a costly impediment that can be overcome by digital means was briefly mentioned, and Clay Shirky’s books Here Comes Everybody and Cognitive Surplus were discussed.

We then talked about the two worlds of health care: the evidence-based medicine world of doctors and clinical trials and the patient experience world of people living with their diseases and coping with help from others. I mentioned Clayton Christenen’s observation in The innovator’s Prescription that “doctors spend about two hours each year with their diabetic patients, but patients spend 8,758 hours managing the disease on their own.” The two hours are spent in the evidence-based world, and the 8,758 hours are spent in the patient experience world of unclogging insulin pumps and learning when hypoglycemic crises occur for an individual patient. We discussed the need for more clinical trials to increase the percentage of proven knowledge in the evidence-based medicine world from the current 25%, and the fact that the right answer changes when new scientific studies are completed. We also discussed how much the patient experience world has changed with the advent of patient social networking sites and the ability of amateurs to avail themselves to much of the scientific literature about their medical conditions.

I completed my overview opening presentation with a survey of how American hospitals were using social media compiled by Ed Bennett of the University of Maryland. I also presented slides examining how social media could be utilized for personal health records, clinical trial recruitment, treatment and hospital selection, health professional training, disease management, and wellness. My slides are available here http://aarhus11.jboye.com/wp-content/uploads/slides/Jboye-Aarhus11-Kent-Bottles.pdf

Dr. Abir Al-kalemji of the Odense University Hospital in Denmark delivered the second talk: Do Patients Benefit from Social Media? The short answer is we think so, but we need to do research to document what does and does not work. Al-kalemji reviewed YouTube videos for teaching patients exercises, smartphone transmitted pictures of rashes, remote monitoring of anticoagulant therapy, and psychotherapy via social media. She discussed the obvious advantages of improved access, time saving for both patients and physicians, increase in patient safety, and the possible enhancement of therapeutic possibilities. She also listed the limitations of not being able to perform a physical examination, trust and privacy issues, and reservations about the quality of health care information available on the Internet. Al-kalemji finished up with a discussion of Facebook. Some physicians believe becoming friends with patients on this social media site reveals important information about the patient; others were opposed to physicians ever relating to patients via Facebook. Dr. Al-kalemji slides are available here http://aarhus11.jboye.com/wp-content/uploads/slides/Jboye-Aarhus11-Abir-Al-Kalemji.pdf

Dr. Poul Jaszczak, Chief Surgeon, Department of Gynecology and Obstetrics at Herlev Hospital and Chairman of Danish Medical Association Ethics Committee, presented his views on digital strategies and methods for communication. Dr. Jaszczak stated that social media can blur the boundary between a person’s public and professional life, and he recommended adopting conservative privacy settings on social media sites. He emphasized that the ethical and legal duty to protect patient confidentiality applies equally to both the Internet and other media. Dr. Jaszczak does not believe that health professionals should accept Facebook friend requests from current or former patients, and he worries about derogatory comments posted on public Internet forums. Dr. Jaszczak’s slides are available here http://aarhus11.jboye.com/wp-content/uploads/slides/Jboye-Aarhus11-Poul-Jaszczak.pdf

Dr. Jaszczak shared the following posting from a social networking site:

“Dear emergency Registrar:

Thanks a million for misdiagnosing my patient’s perforated bowel as constipation and treating aggressively with laxatives. I’m sure she appreciated the subsequent cardiac arrest and multiorgan failure. Don’t worry, she just needs a new set of kidneys and a liver and she’ll be right. And with that kind of performance, I’m sure you can help her acquire them.

Kind regards,

Lowly intern”

Line Berg Ostergaard, Manager Global Digital Marketing for Zimmer, presented how one medical device company is using social media in the health care space. Ostergaard nicely summarized statistics about patient use of social media, and she emphasized that many patients have changed the way they view authority figures when dealing with a serious health issue. Zimmer has recognized that patients like to talk to other patients, and their website allows patients contemplating hip replacement to talk to patients who live nearby and who have already undergone the surgical procedure. Acknowledging that Zimmer has not yet leveraged the full power of Facebook and Twitter, Ostergaard discussed some of her ideas for the future. She also addressed the current obstacles of the complexity of providing both global and local information and the lack of guidance from regulators. Her slides are available here http://aarhus11.jboye.com/wp-content/uploads/slides/Jboye-Aarhus11-Line-Berg-Oestergaard.pdf

Jens Ole Henriksen, the former CIO at Odense University Hospital, wrapped up our online health track with Smartphones: Healthcare in Your Pocket. Henriksen reviewed the Danish strategy for welfare technology and telemedicine with its emphasis on cost containment, building super hospitals to replace rural facilities, and attention to the needs of the elderly. He also commented on how new technologies like smartphones and cloud computing are disrupting the IT department. According to Gartner, by 2014 the IT department will lose control of over 25% of the organizations’ IT budget and by 2015 there will be four times as many mobile development projects as PC development projects. Comparing the smartphone with its apps to a Swiss Army Knife, Henriksen taught me that all of the following can be done on a smartphone: geographic locator, movies, speech recognition, connect to USB device for weight, blood pressure and other metrics, compass, connect to Internet, accelerometer, light sensor, speaker, and proximity sensor. He also did a masterful job of explaining to the layperson (me) the differences between the three platforms for smartphone apps: IOS (Apple), Android (Google), and Phone7 (Microsoft), and he described the advantages and disadvantages of producing apps for each of the three platforms.

Perhaps most useful was Henriksen’s description of a smartphone workshop he held at Odense University Hospital where physicians, IT experts, administrators, and developers brainstormed on how to best use smartphones in a hospital environment. After coming up with ideas for clinical, patient, encyclopedia, and location applications, the workshop concluded that they should concentrate on creating interfaces for the apps to the old legacy electronic health record, developing patient information apps to help them navigate a complex and large hospital plant, create lab result notification apps, and create an app to support anesthesia and preop processes. Henriksen’s slides can be found here http://aarhus11.jboye.com/wp-content/uploads/slides/Jboye-Aarhus11-Jens-Ole-Henriksen.pdf

The online health track at the J. Boye Aarhus 11 Conference succeeded in opening my eyes to different ways to look at digital strategy. The informal and warm atmosphere during the keynotes, the breakout sessions, the refreshment breaks, and the conference dinners made networking effortless and effective.

What I Learned In Denmark

Even after I had agreed to speak in Aarhus, Denmark at the J. Boye Aarhus 11 Conference, I did not really know what to expect from a gathering of IT and communications specialists who run intranets for large organizations. My experience confirmed the wisdom of going to meetings outside one’s own field and seeing the world through a different lens. Health care has a poor track record of learning from other disciplines, but I discovered a lot that could help us transform the American clinical delivery system. This blog post will be my first attempt to understand what I learned in Denmark.

Michael Edson, the Director of Web and New Media Strategy at the Smithsonian Institute, delivered the opening keynote: Come, Let Us Go Boldly into the Present, My Brothers and Sisters (http://www.slideshare.net/edsonm/michael-edson-let-us-go-boldly-into-the-future). Edson and I chatted the night before his keynote at dinner, and I found him to be friendly, interesting and a good listener. As a lecturer, he is of the pacing and twirling dervish school of keynotes complete with the flashy slides I usually abhor. Even though we belong to different keynote camps (mine is the simple words on simple slides school), I was captivated.

Noting that the new ideas have been around for 5 to 10 years, Edson quoted Howard Rheingold (Smart Mobs), Lawrence Lessig (The Future of Ideas), Don Tapscott and Anthony D. Williams (Wikinomics), Tim O’Reilly (What is Web 2.0?), William Gibson (Zero History), Clay Shirky (Cognitive Surplus), and Thomas Friedman (Serious in Singapore).

Edson’s new ideas include overcoming synchronicity, the changing nature of now and the future, Bill Joy’s Law, cognitive surplus, network effects, Kathy Sierra’s hero, and Moore’s Law.

Lessig wrote, “The open and neutral platform of the Internet has spurred hundreds of companies to develop new ways for individuals to interact…. Public debate is enabled by removing perhaps the most significant cost of human interaction – synchronicity.” When I heard Edson read this quote, I realized that my teaching HPL 500 online for Jefferson University School of Population Health took advantage of this development so that practicing physicians could participate in my class whenever their busy schedules allowed. I also connected this concept with how twitter has enhanced my participation and learning from conferences I do not attend in person or from comments in the twitterstream months after I have given a talk.

Drawing heavily on Gibson, Edson states that the future no longer matters as much as it used to because now is much narrower than it used to be. Things change so rapidly today that we really cannot plan for the future; we have to do it right now.

Bill Joy famously observed, “No matter what business you’re in, most of the smart people work for someone else.” Tapscott and Williams build on this idea and describe how mass collaboration becomes so much more important and powerful. “As a growing number of firms see the benefits of mass collaboration, the new way of organizing will eventually displace the traditional corporate structures as the economy’s primary engine of wealth creation.” Edson also reminds us that Shirky estimates that there are a trillion hours a year available for networked people to collaborate and create, and Kathy Sierra reminds us that since every man (patient) is a hero, all of us should help everyone else achieve their dreams and goals.

Edson wrapped up his talk by describing a Thomas Friedman column about how Singapore elementary school kids learn about DNA by reenacting CSI crime scenes in class. Edson and Friedman would have each of us ask the following questions: 1) What world am I living in? 2) What impact do I want to have in that world? 3) What should I do today?

Feeling totally inspired, I sampled various presentations from the ten tracks: digital strategy and governance, going mobile, higher education, user experience, web content management, digital marketing, intranet, online communications, online health, and standards and technology.

Highlights for me personally included a deeper understanding of search and how organizations are struggling with going mobile. Martin White of intranetfocus.com displayed an encyclopedic knowledge of the past, present, and future of search. I especially enjoyed his story of the company that discovered the most popular search was for “conference call” because nobody could remember how to call into meetings, and his classification of searches as successful, failures, or disasters. Disasters occur when employees find old documents and assume, for example, that the old list of banned chemicals is the same as the new list of banned chemicals. Products are made with banned chemicals and a disaster has occurred for the company. It was also sobering to learn that companies with 1000 employees have 200 terabytes of information and that manufacturing companies have 1 petabyte of information that needs to be searchable.

Robert E. Johnson of Bob Johnson Consulting, LLC utilized his extensive experience of consulting with North American universities to deliver a compelling message for all of us to go mobile by identifying our top tasks. His Law of Top Tasks states that not everything on our website is equally important, our visitors determine what is most important, and we have to give up control over what we feature on our websites. When the City of Liverpool developed a mobile website, they were surprised that the number one task citizens wanted to accomplish was to find out about recycling and trash collection days. Needless to say, this was not the top priority of the mayor. Quoting Gerry McGovern who said, “How much of your content is dead and useless junk that impedes navigation and search results,” Johnson said if it won’t fit on your mobile website maybe you should consider deleting it from your traditional website. He also shared a US government website that I have found extremely useful http://www.howto.gov/web-content.

The conference ended with a town hall debate moderated by Janus Boye himself featuring Katrine Thielke of the Danish Patent Office vs. Raymond Boissevain of the Dutch government. Internal communication was declared dead; video is not annoying; remix and mash-ups still add value; big systems like IBM, Microsoft, Oracle, and SAP are not great; apps are here to stay; and we do not need more governance. Thielke won the debate, and Boissevain conceded graciously and retired to the dinner to drink local beer.

In a future blog, I will share the insights I learned at J. Boye Aarhus 11 participating in the online health track.

The Digital Age and the Doctor/Patient Relationship

The digital age has had a deep and likely permanent effect on the patient-physician relationship. I can’t tell you how many times I’ve had physicians beg me to provide them with a way to stop their patients from Googling their symptoms and diagnosing themselves before their first office visit and much to their chagrin, my answer is always the same, “You can’t stop them. Get over it.”

The internet acts as an enormous and easily accessible virtual research library for patients, granting them access on the one hand to quality, data-driven information and personal perspectives that can provide tremendous value and on the other hand to information that is no better than old-fashioned quackery.

But this access to information has not translated into improved interactions between patients and their physicians. It is clear to me that we all need help in rethinking how we can best work together, especially because I believe that we are still in the nascent stages of this age of disruptive new tools that delight some and threaten others. Time and time again I hear stories describing the ways in which this technology seems to be moving us backward instead of ahead:

· When Timothy B. Lee went to a dentist highly recommended on Yelp, he was asked to sign a “mutual privacy agreement” that would transfer ownership of any public commentary he might make in the future to the dentist.

· A TechDirt blog post reported that plastic surgeons have sued patients for their online negative reviews and a neurologist sued the son of a stroke victim for negative comments about the physician’s bedside manner.

Instead of pitting patient against doctor, these tools should be increasing our collaboration.

The days of the paternalistic family doctor who dispenses advice and counsel to an acquiescent, unquestioning patient are clearly over, but that needn’t be a bad thing.

Importantly, this issue features prominently in the new proposed CMS rules for accountable care organizations (ACOs) under the Affordable Care Act. An ACO is a network of doctors and hospitals that share responsibility for providing care to patients. ACOs play an important role in healthcare reform because they are intended to make providers jointly accountable for the health of their patients, providing them with strong incentives to cooperate and save money by avoiding unnecessary tests and procedures. While the focus of ACOs is collaboration at the provider level, the end game is all about the patient and increasing the quality of his or her healthcare experience.

In order for ACOs to qualify for shared savings, they must provide patient-centered care that is influenced by the patient autonomy movement. Before becoming CMS Administrator, Don Berwick wrote a provocative article in Health Affairs calling for a new definition of patient centered care as “the experience… of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care.”

In order to facilitate this shift, we need to resolve the current tension between the philosophy that idealizes the physician as always being right and patients’ newfound autonomy and access to information. We need to engage in a thoughtful discussion about how the new disruptive digital technologies can help both patients and physicians get what they need. After all, both have the same ultimate goals: good clinical outcomes and a meaningful relationship.

The good news is that these disruptive technologies can be the very mechanism we need to develop more accountable, quality-driven healthcare delivery systems because they can address some of the significant gaps in patient-physician communications that are so detrimental to the relationship. The Consumer Reports National Research Center conducted patient and provider surveys about the doctor/patient relationship and concluded that patients would get more from doctor office visits if they planned ahead, took notes during the appointments, and conducted careful online research for information. Other studies have shown that patients remember only about half of what physicians tell them during their visit and that 90 percent of patients receiving a new medication reported their physician never described the drug’s side effects. Perhaps most disturbing of all, more than 30 percent of patients were unable to name their diagnosis after being discharged.

Technology, far from being the villainous entities that so many care providers see, can actually improve a patient’s experience and address those disturbing statistics. Websites now provide patients with the tools to prepare for upcoming visits by listening to actual conversations between providers and patients that have the same diagnosis; they can organize their questions before the visit; they can record their visit using digital or mobile recording devices; and they can review the recording after the visit with caregivers and family members to better understand how they can partner with their physician’s advice.

For disruptive solutions to be successful, all of us must be willing to adapt the traditional doctor-patient relationship. Patients and physicians alike are confused and disoriented by the new digital world, even while being empowered by the knowledge they can impart. These cutting edge technologies have the potential to dramatically improve a patient’s healthcare experience, but to get there, we first have to engage in some good old fashioned talk.

Physician Executives Should Support Patient Engagement/Activation

The doctor/patient relationship is certainly changing and evolving. A term I hear a lot today is: “patient engagement/activation.” Why is this concept so important and what does it mean? What can physician executives do to make it easier for our patients to become engaged and activated?

Judith Hibbard has pioneered the study of patient engagement, and she noted that one needs knowledge, skills, and emotional support to actively engage in one’s health care. She identified four behaviors associated with engagement and activation:

1. Self management

2. Collaboration with provider

3. Maintaining function/preventing declines

4. Access to appropriate and high quality care

She also developed a Patient Activation Measure (PAM) tool to place individual patients on a 4 level scale of engagement and activation. (1)

The Center for Advancing Health defines engagement as “actions individuals must take to obtain the greatest benefit from health care services available to them,” and they expanded Hibbard’s work by identifying 43 engagement behaviors that can be grouped into ten categories. (2) Patients who do not successfully engage in these behaviors will not receive optimal health care and will not realize all the benefits of the many scientific breakthroughs of 21^st century medicine. Because of the economic environment, the increasing complexity of medical care, and health care reform, it is becoming more important for patients to take an active and knowledgeable role in their health care.

The ten categories of the Engagement Behavior Framework are:

1. Find safe, decent care.

2. Communicate with health care professionals

3. Organize health care

4. Pay for health care

5. Make good treatment decisions

6. Participate in treatment

7. Promote health

8. Get preventive health care

9. Plan for the end of life

10. Seek health knowledge (2)

Recently Klick Pharma invited 19 health care activists from a wide variety of disease states to participate in a conversation about an ePatient Bill of Rights that would support patient engagement and activation. After four hours of conversation, this group reached consensus on the following key messages of such a bill of rights:

1. Shared access to my data

2. Attitude of collaboration and overall respect

3. The patient is the largest stakeholder

4. Transparency and authenticity across all areas

5. Voice of the patient is a legitimate (clinical) source

6. The right to efficient communication with providers who utilize the technology we need (3)

It is not easy for any one patient to follow all of the above suggestions from the three different groups advocating patient engagement/activation. The Medicare Current Beneficiary Survey reported that only 30% of older Americans possess the motivation and skills to actively engage in their health care. (4) Hibbard found that 23% of those surveyed had embraced such behaviors in their health care, but they worried they would falter during a medical crisis. In her survey, 12% wanted to remain unengaged and 29% reported they did not have the knowledge to understand their treatment regimens. (5)

Researchers who have studied patient engagement/activation have found a positive relationship to health status outcomes. (6). Beatrice Golomb and colleagues found patients on statin drugs were far more likely than doctors to initiate discussions of symptoms possibly related to the drugs. (7) Annette O’Connor’s systematic review of the effects of shared decision-making technologies found a 23 percent reduction in surgical interventions among patients using them, with better functional status and satisfaction. (8)

David Mosen and colleagues documented that patients with high PAM scores were significantly more likely to perform self-management behaviors, use self-management services, and report high medication adherence. They were also ten times more likely to have high patient satisfaction scores and five times more likely to have high quality of life scores. (9)

Jessie Gruman has had cancer four times and is the founder and president of the Center for Advancing Health. Addressing an audience of health care providers, she recently said:

As a savvy and confident patient who is flummoxed by so much of what takes place in health care, I am regularly surprised by how little you know about how little we patients know. You are immersed in the health culture. But we don’t live in your world. So we have no idea what you are talking about much of the time. One way to help us feel competent in such unfamiliar environments is to give us some guidance about what this place is and how it works. What are the rules? (10)

Experts in patient activation/engagement suggest that hospitals and medical practices provide each patient with a short guide that explains how best to be a patient in that unique setting. Such a handbook could be printed, a smartphone app, an email, on a website, or a poster prominently displayed in the waiting room. It is important that patients understand how to get after-hours and emergency care, how to make appointments, what accommodations (physical navigation, translation services) are available, what insurance documents should be brought to the office visit, how to get prescription refills, and many other basic kinds of information that often frustrate even motivated individuals. (11)

Another tool that can be individualized for each clinical setting is a written contract or pact that clearly sets out the roles and expectations of all involved in the doctor/patient relationship. Components of such a document might include that patients should tell their provider about all other visits to physicians and alternative healers and that providers will ask about such care and be willing to share information. Another part of such a contract might require the patient to prepare for each visit by writing down a list of concerns and questions and the provider to respond to the patient’s questions and answer questions in a manner that the patient can readily understand. (11)

Another suggestion is that hospitals and medical practices become much more open to new technologies. Many patients find patient social networking sites such as PatientsLikeMe, DiabetesMine, Inspire, Disaboom, and IMedix valuable sources of practical information about living with chronic disease. CureTogether is exploring ways that patients can conduct observational research about their condition that is quite helpful to newly diagnosed patients. Patients are going to continue to google their symptoms and try to diagnose themselves before visiting the physician. Smartphone apps like CareCoach.com can help patients prepare for their visits by listening to actual patient/doctor conversations, recording their office visit so they can go back over instructions and physician advice, and sharing their audio health record of the visit with members of their care team who are unable to accompany the patient to the visit.

By providing guides, compacts, and information about new technologies, physician executives can send a powerful, positive message to their patients. Gruman believes such support communicates that we want our patients to be comfortable, to receive the best possible care, and that we are accountable for our services because we clearly spell out our commitments. (10) Physician executives should embrace patient engagement/activation because it will help our patients get better clinical outcomes and because it is the right thing to do.

References:

1. Hibbard JH, Stockard J, Mahoney ER, Tusler M. Developments of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res 2004; 39: 1005-26.

2. http://www.cfah.org/pdfs/CFAH_Engagement_Behavior_Framework_2010.pdf

3. http://www.klick.com/pharma/blog/2011/09/epatient-bill-of-rights/

4. Williams SS, Heller A. Patient activation among Medicare beneficiaries: segmentation to promote informed decision making. Int J Pharm and Healthcare Marketing 2007; 1: 199-213.

5. Hibbard JH, Mahoney ER, Stock R, Tusler M. Do increases in patient activation result in improved self-management behaviors? Health Serv Res 2007; 42:1443-63.

6. R.M. Epstein and R.L. Street, “Patient-Centered Care for the Twenty-first Century: Physicians’ Roles, Health Systems, and Patients’ Preferences” (Paper prepared for the ABIM Foundation Summer Forum: From Rhetoric to Reality: Achieving Patient-Centered Care, Yountville, California, July 2008)

7. B.A.Golombetal.,“PhysicianResponsetoPatientReportsofAdverseDrugEffects:ImplicationsforPatient-Targeted Adverse Effect Surveillance,” Drug Safety 30, no. 8 (2007): 669–675

8. http://content.healthaffairs.org/content/28/4/w555.abstract

9. http://myweb.facstaff.wwu.edu/knecht/Lectures/Stepping%20stone%20readings/Activation.outcome.pdf

10. http://e-patients.net/archives/2011/06/jessie-gruman-at-icsi.html

11. http://www.cfah.org/pdfs/CFAH_PACT_Special_2010.pdf

Should Hospital Boards Embed Generative Thinking into their Agenda?

Hospital systems and physician groups are faced with unprecedented change demanding decreased per-capita cost and increased quality in American health care. Boards of directors are underutilized resources that must be tapped more effectively in order for such organizations to survive in a time of industry consolidation. Generative thinking is a tool that can help organizations innovate in order to improve patient care and the financial bottom line.

Generative thinking is when a board becomes involved early on with management in trying to make sense of the current environment. For example, any US hospital must figure out strategies and tactics to deal with Medicare cuts, demands for higher quality, and migration away from fee for service to global payments in both the PPACA and the federal budget ceiling compromise that will result in at least $1.5 trillion or $1.2 trillion federal budget cuts staring in January 2012. Local events in each market will be different in each region. Western Pennsylvania hospitals, for example, must effectively respond to the Highmark purchase of West Penn Allegheny and the continuing tensions between Highmark and UPMC.

One way to encourage generative thinking in this setting is to make sure the board is present when a problem is defined because such a definition will affect strategies, policies, decisions, and actions to respond to the above described environment. Boards should help management decide what problems to pay attention to and not just respond to management’s understanding of the environment. Generative thinking has been described as getting to the question before the question and is about values, beliefs, assumptions, and organizational culture that will affect what problems we pay attention to and what strategies and tactics we choose.

The importance of framing the problem correctly was demonstrated by Clayton Christensen in The Innovator’s Prescription when he described the unsuccessful attempts by a company to increase milkshake sales. As Peter Drucker once wisely wrote: “The customer rarely buys what the company thinks it is selling him.” It turns out that 40% of milkshakes are purchased in the morning by long distance commuters who like the fact that it takes a long time to drink and that you can still drive with one hand on the wheel. By defining the job that the milkshake was being asked to accomplish, the fast food company was able to increase sales by making the shakes thicker so it would take more time to drink them on the long commute.

Generative thinking is not the only function of a board of directors. The three different modes of governance are fiduciary, strategic, and generative. The first two are self-explanatory, but the last mode is the least understood and the most neglected by non-profit boards.

Generative thinking requires a greater comfort with conflict and disagreement than is usually present on nonprofit boards. Because generative thinking is about deciding what the real problem the hospital faces in a confusing, unpredictable, and rapidly changing external environment, there needs to be conflicting viewpoints.

Alfred Sloan, GM chairman from 1923 to 1956, once stated: “Gentlemen, I take it that we are in complete agreement on the decision here. Then I propose we postpone further discussion to give ourselves time to develop disagreement and perhaps gain some understanding of what the decision is all about.” John Wooden, the most successful basket coach in history advised, “Whatever you do in life surround yourself with smart people who’ll argue with you.” He won his first NCAA championship in his 16^th year of coaching at UCLA when he stopped hiring yes men and instead chose Jerry Norman as an assistant coach who installed the zone press Wooden detested.

A hospital board needs to understand generative thinking and decide if it wants to be involved upstream in discussions about how the hospita should respond to the environment. If there is agreement about the need to improve this mode of governance, then different methods can be tried to embed the concept into the work of the Board.

References:

Richard P. Chait, William P. Ryan, Barbara E. Taylor, Governance as Leadership: Reframing the Work of Nonprofit Boards. Hoboken, New Jersey: John Wiley & Sons, Inc., 2005.

Manda Salls, Why Nonprofits Have a Board Problem, Harvard Business School Working Knowledge for Business Leaders, 4/4/2005.

Michael A. Roberto, Why Great Leaders Don’t Take Yes for an Answer: Managing for Conflict & Consensus. Upper Saddle River, NJ: Prentice Hall, 2005.

Clayton M. Christensen, Jerome H. Grossman, MD, and Jason Hwang, MD, The Innovator’s Prescription: A Disruptive Solution for Health Care. New York: McGraw Hill, 2009.

Peter Drucker, Managing for Results, London: Heinemann, 1964.