What evidence would you bring to convince cancer researchers and policy makers to pay attention to how the internet is changing health and health care?
That’s my challenge for the Dec. 14 meeting of the President’s Cancer Panel, “The Future of Cancer Research: Accelerating Scientific Innovation” (PDF of the agenda).
To start, I’m boiling down my latest research to its essence:
I am also reviewing my notes on other people’s research and perspectives, such as:
- Erin McCartney’s essay on how the Palo Alto Medical Foundation created a Patient-Driven Cancer Patient Advisory Council.
- Andrew Schorr’s essay on Patient-Experts at Medical Conventions.
- Bill Claxton’s essay on taking his complicated cancer treatment into his own hands.
- The National Cancer Institute’s Health Information National Trends Survey (HINTS), which finds that people’s “trust in information from healthcare professionals had increased while their trust in health information from the Internet had waned” between 2002 and 2008.
- The Center for Studying Health System Change’s 2008 report, How Engaged Are Consumers in Their Health and Health Care, and Why Does It Matter, which found that, of all those living with chronic conditions, cancer patients are the most likely to be “activated.”
And I’m remembering the last time I participated in a high-powered cancer research discussion:
- The Institute of Medicine’s October 2009 workshop on building a rapid-learning system for cancer became, for an hour or so, a seminar on participatory medicine.
- A book was based on the workshop, A Foundation for Evidence-Based Practice: A Rapid Learning System for Cancer Care, which you can buy, read online for free, or download as a PDF.
- The discussion portion of our panel, which included Gilles Frydman of ACOR.org, Simone Sommer and Josh Sommer of the Chordoma Foundation, and Jamie Heywood of PatientsLikeMe.com, was captured in a short video.
What else would you bring to the table? What points would you emphasize?
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Amazingly, after checking the agenda for the 4 meetings of the President’s Cancer Panel, I can affirm that patient advocates are just not represented at all. In 2010! The closest is the executive director of the Dr. Susan Love Research Foundation, a great research organization but not a grassroot entity like those who have grown organically on the Internet and are fully managed by patients or caregivers, like the Leiomyosarcoma Direct Research Foundation or the Liddy Shriver Sarcoma Initiative.
One more time, the agendas show that for many top researchers and clinicians, it’s still really too bad you need patients to practice medicine. Life would be so much easier if we could just completely forget about them.
These researchers could learn much by inviting real patient advocates like Robin Martinez or Josh Sommer, to mention just 2 among thousands of names of deeply activated patients & caregivers. Andrew Schorr’s& Bill Claxton’s essays are just 2 more examples that demonstrate that the NCI is still missing a fundamental aspect of the shift taking place a little more every day. Now innovation in research doesn’t come only from within the confine of the centers of excellence.
Refusing to have a real philosophy of inclusiveness in the age of the networked patients, while we are witnessing, in parallel, the rise of genomics in cancer research, will not help the NCI and this nation. But I am not convinced there is much, if anything, we can do to change the institutional mindset.
As I was writing this post, I said to myself “Set!” and now, with Gilles’s comment, I can add “Spike!”
(Sorry, volleyball reference.)
Yes, I had noticed the same issue, which is why I highlighted the panel Gilles & I served on at the invitation of Paul Wallace, MD, of Kaiser Permanente.
If you watch the video, Paul closes the discussion around minute 8 with an important observation:
“Our hope for this session was to introduce you to each other and also to test whether there was opportunity to continue the dialogue [between patient experts and cancer researchers]. I would say there is pretty strong preliminary data that there is an opportunity.”
He continues:
“I would also emphasize that a lot of what’s intrigued me about this is that while on one hand we say, ‘ah, that 2.0 stuff, they’re just trying to figure out how to work around the doctor.’ I hope what you heard was that every one of these [presentations] was about how to reinforce, and complement, and extend everything the doctors are working very hard to do.”
One more thing: A friend who works at NCI told me last year that the book based on that workshop, A Foundation for Evidence-Based Practice, made the rounds at the top of the organization. So there is hope.
I am not in DC and I can only witness from the outside what the current executive team at the NCI has done for/with patient activation & advocacy over the last 20 years. Unlike you, I am not optimistic at all!
Look at the record of Dr. Varmus as President of Memorial Sloan Kettering and if you can find one single instance where he promoted the concept of patient participation in their care (let’s forget putting them in a central role in research!) I’ll bite my tongue.
Susannah,
Further to my earlier remarks, before I spend any time to do something related to the NCI I would like to have some level of certainty we can have even a tiny impact. I lack this certainty.
Until proven otherwise, I consider the current iteration of the NCI PCP to be conspicuously not patient friendly. And you can quote me on that!
Yes, I will quote you on that.
My philosophy is to keep shining a light on the path. It helps that my role is as an outside observer, an “internet geologist” as I like to say. People can build where they like, but their structures will last longer if they know the history of the landscape and acknowledge that it is changing under their feet.
As one of my colleagues at the Pew Research Center said recently, “We don’t tell you what to think. We tell you what to think about.” That’s different from what you do, as a hacker of data and activator of patients.
Susannah,
as you know I rant when I think it can lead to a productive conversation. This is of particular importance now, since as Laird noted, we have already seen the fundamental importance of online communities in facilitating clinical trial recruitment for the new generation of targeted therapies. Gleevec was approved by the FDA MUCH faster than originally expected in big part thanks to a small number of patient online communities for both CML and GIST.
We are talking about a very significant accelerant, one that helped in a parallel fashion individual patients and one of the largest pharmaceutical companies. It happened ONLY because the communities acted as amazing proxies and helped initial triage of the patients. That’s why I find the current lack of patient representation so disturbing, 10 years after this initial Gleevec story.
We all know that access and recruitment for clinical trials is one of the most significant problems of the oncology research enterprise. Involving patient communities may be the most effective way to improve the process and would certainly characterize as the cheapest procedure possible.
Susannah — I think you will be most convincing if you lead the panel to what patient networks can do for THEM. Specifically, I’m thinking of accelerated trial recruitment. Clinical Trials.gov lists 1,851 trials that are currently recruiting. NCI has 545 trials that are looking for patients. ACOR has the ears and trust of tens of thousands of patients. Other groups have their constituencies, too. Ask Gilles for the specifics of ACOR’s efforts in the Gleevec GIST trial. Have the panel imagine what it would be like to cut 10-15% off the recruitment time for their studies.
Thanks, Laird! I’ve said many times that patients and the people who love them are not just a target audience, but potential colleagues – clinical trial recruitment is an excellent example.
Susannah,
I don’t quite know how to phrase this. Is anybody but you at this meeting aware of just how empowered and informed patients have become?
Do they still think the expert patient internet movement is a pesky novelty which distracts patients from taking orders with a smile? That “denial” thing?
If they are so behind, that puts you in the position of either, (A) sympathetically warning them that the barbarians are at the gate, or (B)telling them the patients have started without them and they would do well to get in front of this movement rather than behind it. They should be trying to get into e-patient meetings to demonstrate how they could play a role in decision-making. They could make their case for defining their role in participatory medicine.
I feel patient experts negotiate from a position of weakness whenever they try to persuade/PR their way into the circle of presumed influence leaders.
We need to create our own circle, a parallel institution.
Personally, I vote for creating our own President’s Cancer Panel, v.2. If they have a failed institutional model, we can update and revamp with our own ideas.
Thanks, everybody, for your provocative thoughts.
Lynne
Lynne,
I have to agree that it seems there are a lot of people out there who just don’t get the fact that I as a patient want to have more input and control of decisions about my own healthcare. I know there are still doctors that scoff at information a patient obtains from the internet and wants to talk about and some actually get upset that someone would dare to question anything that they say.
For me, the days are long gone where I just take the doctor’s word as gospel. I research my conditions and the medications that I take and discuss my concerns with my healthcare provider. I question whether or not I really need to have certain tests done based on the information that I find on the internet, which is a big change because my feeling always was that the doctor was the expert and they knew what they are doing.
The panel needs to understand that there are a lot of people that are no longer content with blindly following the doctor’s orders but want to be involved with the process.
Linda
I know that the primary focus of e-Patients.net is on involving patients in the treatment of their diseases such as cancer, but one of the more glaring omissions I see in the agenda is anyone who I would imagine might speak to the prevention of cancer.
Others have already expressed criticisms of the National Cancer Institute in the comments, but one of the sharpest criticisms I’ve read about NCI – and the American Cancer Society – is an interview with Dr. Samuel Epstein I read shortly after my wife’s cancer diagnosis: Cancer: It’s a Growth Industry.
In the 2003 article in Z Magazine, Epstein argues that “There has been a massive escalation in the incidence of cancer that cannot be explained away on the basis of smoking, longevity, genetics, or a fatty diet”, and highlights the potential roles that consumer products (food, cosmetics, toiletries, household goods), drugs and the petrochemical contamination of our air, land, water, homes and workplaces.
He goes on to champion toxic use reduction, one of the efforts that the Cancer Prevention Coalition continues to promote.
It sounds like you already have a pretty full agenda for the meeting, and I know this is outside the traditional scope of the e-Patients agenda, but you asked for input, so there you go.
Joe, I don’t run this place & didn’t write the white paper, but my two cents is that preventing / offsetting disease is certainly something that would interest an empowered person thinking about health.
Long before the interwebs, our founder “Doc Tom” published the magazine Medical Self-Care. Check out these excerpts from our August post about it:
and:
Thanks, Dave.
I like the notion of including prevention in a broader concept of empowerment.
I also enjoyed reading the post about Dr. Tom, especially the rather unconventional path he took to doctorhood.
Thanks, Joe! I will try to work something in about prevention, b/c you’re right – it’s a significant concern for people, if not for this panel.
Did you see Dr. Watson’s comment today that cancer will be cured in his lifetime? And he’s 82 years old!
http://on.wsj.com/gs32uT
Interesting comment by James Watson. In direct opposition to Harold Varmus’s opinion, another great scientist and Nobel prize winner, BTW. In this argument, with my very limited knowledge, I believe that Varmus POV is a much more accurate rendition of today’s reality and is not trying to over promise (a recurring theme among all the oncology research leaders I have met):
“Over the course of that period of 30 or 40 years, by investing in model systems and basic biology and many other things, taking advantage of some clinical opportunities, it’s become apparent that we can identify the set of genes that play a major role in cancer.”
“FLATOW: Mm-hmm. Do you get tired when people keep asking you when are we going to cure cancer?
Dr. VARMUS: I’m not as fatigued as an instructor as that question might imply. I think the question itself, of course, is very naive, and it’s naive in an -actually, in an interesting way. And that is while cancer is united by its mechanism, it’s manifest in many different tissues and in every tissue in a different way.
One of the things we’re learning is while there are commonalities, every cancer is different in some way. Cancers have lots of changes, and the task for modern cancer biologists is to understand which of those cancers is most significant with respect to the likelihood of the cancer actually leading to death, and more importantly, for the patient, offering a different set of prospects for treatment.
I work for an online application developed specifically for cancer patients called Navigating Cancer, and we are seeing that a number of community cancer clinics and their physicians do get the value of having their patients (and caregivers) involved in the care management process. They don’t have the resources to create an application on their own, but do want patients to have access to the latest information and tools to participate in their care.
Brendon, you are describing the scenario that is familiar to me: well-meaning professionals who are curious to learn about social media, but a little shy because they’ve been too busy to catch up on their own.
Personally, I am very happy to play the role of tour guide. It’s not everyone’s job to keep up on the latest technology and to think about its implications (but it’s my job, and I love it). It sounds like you have found another way to contribute. Thanks for sharing your perspective!
Ommmmm. Gilles makes me seem like such a calm person.
Susannah,
Here’s my challenge. Many sarcomas present as a suspicious lump and bump. Because the bump is not on a breast or other critical reproductive area of the body, the attitude of GPs and the medical system at large is that it is a cyst unless proven otherwise (it gets bigger, metastasizes, and kills the patient). Sarcomas require expert pathology since they can also be extremely difficult to diagnose. This makes everyone nuts and plays on institutional and physician arrogance (“It’s benign. Don’t worry.” ” It’s malignant. Sorry, you’re dead.”)
The ACS used to have “suspicious lumps and bumps” on its list of Early Warning Signs of Cancer but gave up in favor of addressing major cancers, breast, prostate, etc. to survive financially and compete with the new kid on the block, Lance Armstrong.
One way that the ACOR Sarcoma list SAVES LIVES is by directing new members toward sarcoma centers of expertise so they get the right treatment, beginning with correct DIAGNOSIS.
So what would constitute “evidence” of saving lives in this instance? Physicians and hospitals do not study unnecessary deaths of this type ( by ineptitude and refusal of local institutions to make a correct referral until the cancer is full blown). It is not in the financial or competitive interest of major cancer centers to push for rationalized systems of referral as has occurred in Sweden and as is promoted by the NHS in Great Britain.
The way to SAVE LIVES is by a) re-educating the public about the potential dangers of suspicious lumps and bumps ; b) about how to bypass local physicians to get to tertiary care for expert EVALUATION. The sarcoma list on ACOR may get patients whose cases have already been bungled and re-bungled (new verb) locally, as was my daughter’s case, but they usually get them to a specific person and connected to an expert system within minutes or hours.
Within 2 hours of joining ACOR Sarcoma, for instance, I heard directly from Dr. Sharon Weiss, a leading international expert on the subject. What took 10 days at the Stanford path lab took Dr. Weiss’s team 48 hours.
This would speak to prevention, not clinical trials, which profit many entities. If sarcomas are not caught early, the patient usually dies since they are “resistant” to chemotherapy and radiation therapy. These are NEEDLESS deaths caused by physician ineptitude and lack of public education.
So how is any of “evidence based” enough to get attention?
btw
I did get in direct contact President Bush’s panel on cancer in the previous administration as well as some heavy hitters with the NCI. The message I got was: If it goes to the President’s Panel, it’s just for PR. It means nothing will happen. We re-directed, working with other rare cancer groups, including pediatric, trying to get a Congressional earmark. Nothing. Then we had something written into Senator Kennedy’s cancer bill before his death, then Obamacare took over. Still nothing.
“Still nothing”.
That should be how we describe a lot of the current situation.
In Susannah’s list of documents she’ll use for her presentation at the PCP, you can find Erin McCartney’s essay on the patient-driven patient advisory panel at the Palo Alto Medical Foundation. Great idea! No qualms about it.
Look anywhere for the list of panel’s members and you won’t find it. What you will find are 5 individual stories from the early panel members: 3 breast cancer and 2 prostate cancer “survivors” (I personally wish we could find a better term than survivor). In other words, nobody representing the hundreds of other forms of cancer where the orphan status of the disease changes completely the human experience and the radical necessity to get involved in your own care if you want to get optimal care. After managing ACOR for 16 years I am sure that breast or prostate cancer patients cannot fully understand the experience of, say, sarcoma patients.
Excellent post, Gilles. I learned two new terms :) :)
Hi Gilles,
To answer your question…in addition to breast cancer and prostate cancer, the other forms of cancer currently represented on the Palo Alto Medical Foundation’s Cancer Patient Advisory Council are brain cancer, head and neck cancer, and childhood neuroblastoma. Also, in agreement with you that some people do not prefer the term survivorship, therefore we also use the words “focus on living” and “living with cancer” in our cancer care committee.
It is so essential that cancer patients be the ones to lead a cancer patient advisory committee. We formed ours back in 2006 and the patients are the primary members and decisionmakers. Anyone interested in learning more about forming a truly patient-driven Cancer Patient Advisory Council is welcome to read the earlier post on epatients.net http://bit.ly/hTctdK.
Thank you to everyone in these comments for helping to keep the patient voice front and center.
Regards,
Erin
Chris, this is yet another reason I love sharing and listening online. Not only do I learn new things, widen my lens, and incorporate new insights into my research/speeches, but I get an unvarnished view of organizations. Thanks.
Yep. Unfortunately we’ve been rolling this boulder up the hill of the President’s Cancer Panel. Just PR. Heartbreaking the way they get patient “stories” to publicize something. Oversold have this on quite high authority it’s just BS.
Can you explain how ACOR Sarcoma’s “mop up/rescue” of medical bungling would constitute evidence-based medicine?
The deal is: the way to predict change is not through talk. It’s cash driven. These top docs know that prevention/education works — that’s the main reason for the “bump” in cancer survival stats according to the ACS. Aside from the Big Four, there’s no money in education/screening. And there’s NO money for tertiary care centers in FNA/screening (fine needle aspiration). The idea almost panics them.
Hi Susannah,
My 2 cents…
Let them know that cancer patients do want to be a integral part of the care team, not a spectator, nor a helpless victim of this disease.
There are increasingly sophisticated tools at the disposal of the cancer patient, but finding them, knowing who to trust, is not easy, especially for rarer forms of cancer.
Cancer is increasingly being viewed as a chronic disease (see Emperor of all Maladies) that patients will need to manage over an extended period of time. Patients and their families need to know what to expect. Today, that type of information is not easily sourced.
Lastly, cancer patients should have ready access to all of their medical records, all of their labs, all blood work etc. Today, the release of such data is anything but consistent as some hospitals/doctors will grant complete access (Group Health in WA) while others (Dana Farber in Boston), restrict access to key cancer markers. This is an area where the govt could step in and set a national policy granting patients full & complete, unhindered access to their PHI.
After posting this I’ll probably think of others, but this is a good start.
Thanks, John! I am turning in my formal paper tonight, but still have room in my remarks for new points — much appreciated.
I decided to publish a paper next week on pewinternet.org that I’m currently calling “Cancer 2.0.” It draws together what I wrote in the original post and some of the insights people have shared in the comments. Thank you to everyone who contributed (and who will contribute, since I’m still writing it).
I thought I’d share some of the source material I’m adding about the Life Raft Group and Gleevec, a drug that is now FDA-approved for 10 types of cancer and probably would never have made it past Phase One trials without patient advocacy.
“A word from the executive director,” (Life Raft Group newsletter: June 2007) http://www.liferaftgroup.org/docs/newsletters/June2007nwsltr.pdf
A Conversation with Brian J. Druker, MD: Researcher Behind the Drug Gleevec (NYT)
http://www.nytimes.com/2009/11/03/science/03conv.html
The Informed Patient: Living With a Lifesaving Drug’s Side Effects (WSJ)
http://online.wsj.com/article/SB10001424052970203278404574412791106176098.html
Magic Cancer Bullet: How a Tiny Orange Pill May Rewrite Medical History (book)
http://books.google.com/books?id=ynVUYp9X8a0C&lpg=PP1&ots=LseIdbPQuD&dq=magic%20cancer%20bullet&pg=PP1#v=onepage&q&f=false
I knew the story, but I have never written about it before, connecting it directly to the Pew Internet Project’s research. If anyone has other sources to share, please do!
Here are the questions I plan to ask at the event on Dec. 14:
• It has been 10 years since the Life Raft Group played a pivotal role in Gleevec’s approval. How has the scientific community responded to the opportunity represented by patient organizations such as the Life Raft Group to recruit participants for clinical trials and to aid research?
• Given the evidence that people are ready, willing, and able to engage in online discussions about cancer prevention and treatment, what steps are being taken to ensure that the U.S. does not miss this latest opportunity for education and discovery?
Susannah,
the story of STI-571 (later know as either Gleevec or Glivec, the commercial name depending on the geographical location or Imatinib), is certainly the greatest story showing the power of the interconnectedness offered by the Internet between informed, networked patients, great clinicians, amazing scientists, an extraordinary CEO of a major pharma company and an open-minded FDA, willing to let a whole new world grow in front of everybody’s eyes.
It is a much more complex and engaging story than what people can understand from your (great) list of articles. It’s intimately related to the emergence of new knowledge, leading to the discovery of a new disease, known only by a few doctors and the misdiagnosis made by most oncologists, a story told hundreds of times on an online group we created, thinking only 50 people would ever join.
The story of Imatinib cannot be written without understanding the role of Dan Vasella MD, Brian Drucker, MD and George Demetri,MD. While Imatinib was already known to be effective against CML in 1995 no one knew it would be just as effective for a rare cancer with unknown etiology! What is maybe the most extraordinary story of Gleevec is the quasi-simultaneous discovery of:
– a new molecular anomaly (CD117 or the mutation of the c-Kit tyrosine kinase receptor) and its central role on the etiology of a type of cancer called GIST (GastroIntestinal Stromal Tumor)
– a specific target for this newly discovered mutation (Imatinib)
This was the first time in oncology history that everything was working in parallel and created the second major use for this amazing targeted therapy.
Much less complex but equally important, for a given period of time, the ACOR L-M-SARCOMA community helped hundreds of misdiagnosed patients learn of their situation and equipped them with the information that both saved their life and greatly accelerated the recruitment of most of the patients who decided to try the STI-571 trials for GIST. ACOR & non-ACOR CML online communities were just as important but CML was a well known disease and misdiagnosis was not a significant problem.
Today, Imatinib as been shown to be effective for mutations in over 40 types of cancer, often very rare mutations. It is a treatment that has revolutionized the entire pharma industry because the real risk taken by Novartis CEO to accelerate production of this brand new treatment designed to treat 2 rare/unusual cancers ended up as a major financial success for the company.
Want more info?
I used to work for Novartis, although past the time that Gleevec (Glivec in Europe) was developed. Dan Vasella, who was responsible for pushing the development of drug for a disease with a small market, told the story in his book “Magic Cancer Bullet.” http://bit.ly/gBJbU3
Susannah
fyi for the presentation: Most people don’t know this, but pediatric cancers ARE rare cancers. So there’s a whole separate movement/competition for pediatric dollars led by St Jude Children’s Research Hospital which uses children as props and parents as pawns. They go on and ON about cutting edge research, new treatments, etc. but fluff their survival stats, which INFURIATES more sophisticated parent-advocates. The sub-set of survival numbers that haven’t moved are sarcomas. They also prop some poor kid up there with movie stars with a sarcoma, usually osteo, and imply survival stats have improved for this subset when nothing could be further from the truth. GLEEVAC works for rp sarcomas. not others. What’s also distressing is that pediatric oncologists in another context are using parent volunteers as front to promote their own research agendas while they treat parents advocates and their patients like HELL. (used to be that they wouldn’t reveal that they knew when a trial was not working, continuing to keep the child subjected to invasive and worthless treatment). I thought my capacity for cynicism was exhausted by Thai politics until I put my toe in the gator swamp of pediatric oncology. Email me and I can get you names beyond the PR presentations.
I am a blogger, author and stage IV breast cancer survivor who has experienced first-hand how important the online community is to cancer survivors.
Frustrated by doctors’ death sentences, I used the internet to find other cancer survivors like me who beat the odds. I found the most common attributes were tenacity and taking a proactive role in their healthcare. I started a blog and soon found people from around the world who were like me and didn’t want to just give up and listen to negative statistics or physicians who think they’re a lost cause.
This connection with other survivors offers more than hope and support. I’ve learned and shared about treatments, both traditional and holistic, that my doctors never told me about.
I would suggest to the panel is the medical community needs to collaborate more with cancer patients and each other to provide the best care. I believe if I didn’t do my own research and networked with other survivors, I might not be alive today…or at the least be very ill from treatments that aren’t working.
It seems many specialists, such as oncologists, only focus on their methodologies and discount other options. It is often up to the patient to seek other avenues for treatments.
Also, I think we need to get away from the notion that cancer is too complex to cure. Rather than having pharmaceuticals looking after their own interests, why not pool all of our talent and dollars into finding a cure? Like the mission to the moon, we need to make a declaration that this is our priority and that we make it happen.
Also the ACOR LMS group of activist women, led by Suzie Siegel a journalistfrom FL, has apparently played a key role in “encouraging” physicians around the country in both the correct dx and tx of uterine LMS by way of partnering with sarcoma Docs at Moffitt hospital there
These ACOR trees are falling in the forest quite a bit …
Btw I think the President’s Cancer Panel is where cancer initiatives go to die ..
ACOR lists are amazing. They sit there quietly, then light up when someone crashes in, panicked with a new dx, often after a lot of bungling, and do what needs to be done: research, support, referrals, fighting through the insurance networks.
List members, often after doing this for years, are extremely connected. They pass the patient directly to top docs, often within hours, sometimes in ways their own docs cannot. We got “backstage,” so to speak, and are very careful with those connections. Phsicians, after a while, have come to trust many of the ACOR teams.
Here’s the paper, everyone:
Cancer 2.0
http://www.pewinternet.org/Reports/2010/30–Cancer-20.aspx
Thanks again for all the input!